Caleb Andrew...we miss you more then words could possibly express! Thank you to each and every one of you who have walked this journey by our side. Thank you for the prayers, meals, support and most of all love as we try to figure out how to move forward without our precious boy. We all loved him dearly and he blessed our lives in so many ways in just the 13 months he was with us. He was such a healthy, happy boy and we will never understand why a nasty infection had to take him from us so quickly. We will continue to use this blog...just may take me a little while to figure out what to say...

Caleb's celebration service

Please join us to celebrate each of the 414 days that Caleb blessed our lives! A casual celebration service will be held at Purcellville Baptist Church (http://www.purbap.org/) on Thursday, 9/22 at 4 pm. There will be a short time of visitation before the service starting at 3:30 pm. There is also a reception immediately following the service.

August 2, 2010 - September 19, 2011

Our precious boy went on to his eternal home to crawl into Jesus' lap this morning. There are truly no words to describe how much we miss him already! I am lost without him and have no idea what to do with myself. This house is not the same without him! There are just no words...

Caleb fought as long and as hard as he could. He probably lasted longer then Drs. expected after an infection like this takes over a little body. They did a great job figuring out what it was and getting him the meds he needed to fight the infection, but the damage was already done to his vital organs. His heart couldn't handle the dialysis and other interventions he needed.

We thank you all so very much for the encouragement these last couple weeks. They kept us going during a very rough road.

John & Joanna

We are getting very close to losing our precious boy...dialysis things had to be changed this morning and when they tried to hook him back up to it he had no blood pressure and heart rate about stopped. They had to do chest compressions and a lot of intervention to get him back...he is barely stable at this point and dialysis obviously cannot be started again at this point....

We are faced with the decision whether to put him through another heart surgery to fix the flaps on his valves that the infection ruined or what to do at this point...

On to dialysis...

Friday - Caleb was put on dialysis for the main purpose of trying to help him get this fluid off. It has built up so much in his system that he is having trouble breathing well at this point. It has built up in his belly so that his lungs are not able to take the deep in and out breaths that it needs to. We had a VERY rocky start to Caleb's dialysis as it made his heart rate low and his blood pressure really low. This also makes him very cold and his core temp was only 94 at one point. He is now under a very cozy warming blanket. His oxygen numbers all day had been a problem because of the increasing pressure on his lungs. His ventilator is set at the highest rates possible, so there is no room to go anywhere on that. He did receive some blood last night as starting dialysis obviously uses a lot through the machine at a time, so he was needing some more to compensate. It seems like once the extra blood was on board he was becoming a little more stable. So I headed home for a few hours sleep. Huge thank you to those who donate blood!!! Caleb has needed it quite a bit this week!!

Saturday - I had a very frank conversation with the Dr. this morning when I got in here. We are basically struggling with how much we are keeping Caleb alive with all these machines vs. what is still trying to save him? The Dr. basically said we are still saving him at this point, but we are certainly not far from the fine line that changes to keeping him alive. We do not want our precious boy to continue to suffer if his body is just not able to heal at any point. So we ask for your prayers that HIS will be obvious to us and the Drs. in where we need to go from here in Caleb's treatment. They are much more drastic measures they can try, but we are truly hoping this dialysis will be the answer to his problems and it will be able to get all of the excess fluid off as fast as they can. From there - everything else will be able to heal!

Psalm 107:26-30
New King James Version (NKJV)
" 26 They mount up to the heavens, They go down again to the depths; Their soul melts because of trouble. 27 They reel to and fro, and stagger like a drunken man, And are at their wits’ end. 28 Then they cry out to the LORD in their trouble, And He brings them out of their distresses. 29 He calms the storm, So that its waves are still. 30 Then they are glad because they are quiet; so He guides them to their desired haven."

Thursday - 9/15

Well, one would hope after being here almost a week, we would have plenty to report and update...not so. Sorry to say, we are not really getting very far in Caleb "better". When some lab work shows improvement one place, it also shows that other things are worse. At this point, Caleb has retained so much fluid that he is huge and in a size 6 diaper! He came into the hospital in size 3!! It is miserable to watch and can only imagine how he feels about it all. Although, he is kept completely sedated because of the ventilator. Drs. have tried different meds to make him get the fluids off, but they are just not doing much. His blood pressure has been better the last 24 hours so they were able to come down quite a bit on the blood pressure medicine. This has to be the worst thing a parent could go through...spinning our wheels in hoping Caleb will get better. Just feels like they have been spinning for days now and we are just not seeing any improvement. The liver seems to be getting better according to the labs, but the kidney numbers are worse OR you have one lab item show improvement, but the other lab pieces that go to that puzzle are worse, so he is certainly keeping these Drs. and residents on their toes! I understand this is going to be a very long, tedious process, but it would just be so much easier if we knew how things were going to go...how well he may or may not recover, etc...

So if you are the kind (like me) who likes to know the full run down...
Neurological - hard to say what brain damage has occurred but he does start to stir every so often, but he is just given meds to put him back to sleep.
Respiratory - he is on a ventilator, but his lungs are becoming really affected by all the fluid that is in his body plus that level of inactivity.
Cardiology - his heart rate has been fine. His heart function is somewhat affected. He has what is called endocarditis (sp?) which is where the lining on the inside of his heart is very swollen and mad. This is what is affecting the flaps they just made for him during his heart surgery as those do not open and close anymore. so as the heart pumps out, the heart is not relaxing enough to fill back up with blood and these flaps on his vessels are causing all kinds of 'leakage' or blood just free flowing in and out of the heart. Not pumping out and staying out to go to the body...just back and forth through the wide open vessels.
Liver - lab #s show slight improvement each day, but his bilirubin is becoming quite elevated so he is a little yellow, but NOT the type of bilirubin that can be fixed with photo therapy like newborns.
Kidneys - lab #s show a decline in function each day, which is the cause of why the fluid just keeps building up in his body. But yet, some electrolytes that would be affected by this lack of function are fine.
The cause of all this - Alpha Hemolytic Streptococcus!!! A raging strep infection in his bloodstream. It is a Strep that is found naturally in our saliva and GI tract and how Caleb's got into his bloodstream - we may never know. :(

Will keep this updated as best I can as anything changes, but at this rate...
As you can probably tell, I am quickly becoming one very weary momma. Having a very emotional day and just do not know what to do at this point...how long do we "wait and see"???
Thank you again and again for your support, encouragement, comments, meals, and prayers through all this!

Joanna

Sunday update

Good evening! We are basically still in a wait and see pattern...there is not much that has changed with all of his blood work, etc. The good thing we have to look at is that nothing is worse...just holding steady. Unfortunately, this is holding steady at "very critical", but holding steady none the less! His liver function tests still show a very sick organ by how insanely high the numbers are for his liver function so that has not gotten any better. His heart has been affected by this infection by more leakage from his surgery areas then before and the right side of his heart is not functioning the way it should or as well as it should. His kidneys are not working as well as they should, but at this point it has affected his liver the most! That is basically not working at all. This affects how well his blood clots, his glucose/blood sugar numbers so he has been on a little sugar IV as well as insulin and I am sure many more things. They are trying their best to regulate everything as well as they can from the 'outside'.

The cultures they have sent off to the lab are already showing something 'growing' in the blood culture. So far they are thinking it is some kind of strep infection...which one, we do not know yet. Here's hoping that the antibiotic they have started him on is near the one he needs to kill this nasty infection. He has been given medicine to help him void some of the fluid that is building up greatly in his system. He now looks like a sumo wrestler...it is pitiful! I guess I could take a pic of him tomorrow just for you all to see our extremely strong little guy!

Thank you all SO much for your prayers and words of encouragement. I came home tonight to get clean and to hopefully get some sleep. I also needed to see Ryan and Sara as I have not seen them or been home the last couple days. Here's hoping with tomorrow being Monday things will move a little faster when it comes to Drs., etc. It is always hard in a hospital on the weekends, they are just not staffed the same as they are during the week.
Please pray for John as he tries to focus at work, for Ryan as he just started the 5th grade and my parents, etc. who are caring for each of us the best we all can!
Thank you!
Joanna

Caleb update - Saturday PM

Please forgive me for copying and pasting these from facebook...this momma is beat!

Caleb was transfered to the PICU Saturday morning as his blood pressure was dropping really low. They gave him a lot of fluid and it did help. Unfortunately, his body is just holding on to all the fluid and he is looking quite puffy! For some reason his body is just not placing all this fluid where it needs to be. He has had an Echocardiogram this morning which showed some leakage at certain vessles/valves but we are not sure how much more there is vs. previous echos. Here's hoping they can put something together from all this! Thank you all so much...this momma is certainly getting VERY worried. :(

At this point, the Dr. is telling us that they think Caleb has some sort of hepatitis (sp?) infection and he is basically in liver failure and his heart is not doing well...he has been put on the ventilator, etc. to see if it will give his body the rest it needs to heal...he is VERY critical at this point...

Saturday PM update - Caleb is about the same as he has been. Most of the bloodwork and tests are either the same or slightly better...so I guess we can stay that he has remained stable at very critical. So it is a good thing that he has remained this way and has not gotten any worse as the day progressed. He is looking like a football player with how swollen he is becoming as he is still holding on to all the fluid.

Here's hoping this is just a 'hiccup' in Caleb recovery...

Wow...well, I can certainly say we never thought we would be back in Fairfax Hospital so soon! We knew if Caleb was ever sick enough for the hospital, we figured it would have to be Fairfax since the hospital closest to us just does not have the Peds department that he needs...never imagined it would so soon after his heart surgery! But here is whats going on...

Caleb was not eating well Wed. evening and was certainly not sleeping well Wed. night, but that is not unusual, esp. the sleep part since his surgery! By Thurs. morning when I tried to give him his morning bottle and the first ounce that went down, came right back up again...I knew something was up. So I took him to the pediatrician like I usually do when he is clearly not well and they thought he seemed like he had a typical stomach virus and said he did not seem dehydrated yet, but that his heart rate was up in the 150s so he wanted us to head to the cardiologist to make sure everything was still going on okay in there...so off we went to Leesburg to the heart Dr. to get checked out there as well. At this point, Caleb had nothing left in his system and was "gagging" (as I will call it) every so often. He checked out fine with the cardiologist so home we went, hoping that this was a 24 hour thing and he would be over it quickly. As the afternoon progressed and he was clearly not turning the corner to holding down pedialyte, I just took him straight to the Loudoun ER. There they hooked him up to some IV fluids and gave him some Rx med for the nausea and thought that would be enough. Needless to say, he continued to gag on a regular basis and so he was admitted. By morning, he was not doing any better and his gagging seemed to be getting worse, esp. after we tried to give him any sort of pedialyte by mouth. We started to notice his eyes were getting puffy and so next thing I know his cardiologist (the BEST Dr. in the world) was at his bedside checking him out. He still did not feel (as the cardiologist had said the day before) that this was heart related and so they needed to do further testing...this brought us to a sonogram of his abdomen. They did let him get a little morphine before attempting the sonogram as he would have NEVER been able to handle it otherwise - at this point, Caleb is clearly miserable! The sonogram of his belly showed fluid built up around his organs as well as inflammed kidneys and an undetermined 3mm 'growth' on his liver. With all this and some fancy names that go with these conditions, he was transported to Fairfax Hospital. This evening was a whirlwind after he arrived as I had to tell his "story" to his nurse, the doctors there, etc. In the end, they have NO idea why he is gagging so much, why this fluid is building up in his system and he is not peeing it out, etc. The Loudoun Hospital peds Dr. basically said it could be heart related, kidney issue, liver issue or an infection...there are a lot of pieces to a puzzle that just does not seem to go together!

We ask for your prayers as the doctors start doing a lot of tests to try and determine what is going on with Caleb's system. We pray that HE will give the Drs. quick and clear guidance as to what is going on and what has caused this. Most of all, we pray that Caleb will once again be completely healed!

Thank you,
Joanna

13 months old...

Today was interesting as I had a lady come up to me in the grocery store and ask me "how old is your baby?" I proceeded to tell her that he is 13 months old today! She told me she had a 9 month old grandson and then she basically asked me what developmental things Caleb is doing...well, I explained to her that he has had two heart surgeries in the last year, so we are a little behind. She was shocked and thought he looked so good for having heart surgery just 3 weeks ago. Guess it at least got us off the developmental subject - esp. since Caleb is not even sitting up on his own yet! Oh well...all in due time. Hopefully once he feels better from his surgery and gets to moving around more, he will catch up quickly. So at 13 months - Caleb is rolling! No sitting up, crawling, walking or eating table foods (he only has one tooth!), but hey, he made it through his major heart surgery with flying colors!! That is something worth being thankful for at 13 months! :)

As for surgery recovery...he is still doing well. We have to carry him around like a sack of potatoes for another 5 weeks, but he at least had no complications. He continues to not sleep very well, but hopefully that is coming soon.

Thank you for all the meals, prayers, cards and words of encouragement you have provided us over the last 13 months! Here's to another 13....YEARS...and then some! :)

As you can see in the first picture, Caleb's favorite thing is his feet! His brings them up to his face and past his ears ALL the time...they are truly his favorite toy! He is quite the flexible one!