Friday, June 29, 2007
Brian and I went over to visit with the nurses on the floor too to see if they had heard the rumor also and they did. They also are trying to pull some strings for us and get us a bigger room (as most of the rooms are very small). Thank goodness!
We also got a visit from Dr. Markert today and she will be on vacation next week BUT . . . she did say that if he continues to make baby steps in the right direction that they are going to start looking for Thymus Tissue for Bubber!!
His girth (belly) has been rather large and this happens when he feeds. They don't have him on his max volume of feeds because we don't think his gut can handle it at this time. We are hoping that his lipase and other enzymes along with his electrolytes stay with in the norm as they have since he has been out of surgery. However, we are not sure if bypass effected the enzymes or if the feeds being stopped for a couple days effected the lowering of the enzymes. . . we will have to wait and see.
Well all. . it is my turn to go back in and visit. I will post more later and will post the pictures as promised.
God Bless you all.
God Bless Caleb!!
Thursday, June 28, 2007
They removed his drainage tube and his femoral arterial line. There was one level yesterday that was a little concerning but it has been staying down for now. In addition, his pancreatic and liver enzymes oddly enough are within normal range for now too. We are not sure if the enzymes were lowered due to being on the bypass machine or if was due to his feeds, which they started back up very early this morning. So maybe we will see if the feeds effect his enzymes.
He looks good. He wouldn't urinate yesterday for them but they gave him a diuretic and that helped a bunch. He hasn't necessitated any pain meds since yesterday afternoon----tough kiddo. His lungs sound pretty good! We are CAUTIOUSLY OPTIMISTIC.
One of the Allergy and Immunology docs took some pictures for us before Caleb was taken to surgery and we have taken some post op ones also so I will post those later this evening.
If all goes well within the next week, they are going to start screening for Thymus Tissue. BUT as Brian and I say it is minute by minute and don't let you highs get to high and your lows get to low.
Again, we cannot thank you all for the prayers and support you all have offered to us. You have all lifted us up so much we appreciate it very much. Thank you and please keep praying for a complete and healthy recovery for Bubber.
God Bless Caleb!!
Wednesday, June 27, 2007
Well the surgery took half the time they thought. They did fix the hole and the triatriatum (the membrane that causes him to have three atriums). They were not sure if they were going to have to fix his tricuspid valve as it was showing a leak. They did not have to fix it, so that is good as it is close to the 'pacemaker' part of the heart. They think the repair of the hole and the triatriatum helped the tricuspid leak.
We finally got to see him around 8:30 lastnight. He has the 'normal' incision from heart surgery-one that goes from the collar bone to the sternum. In addition, he had two leads that were left on his heart that were there in case they needed to shock his heart at anytime. He also has a chest tube in to remove the extra blood from the surgery.
They were hoping to extabate (remove the breathing tube) him lastnight however he started to clamp down on the tube and wheeze so they decided to do more frequent breathing treatments through the ventilator and leave it in through the night.
He was extabated this morning. At the same time they removed the leads from his heart also. They have left the chest tube in and are hoping to remove it sometime today. He is still on many drips (IV's) to try to regulate the heart function as one side of the heart now is seeing less volume and the other side of his heart is seeing more blood volume. In addition, they are trying to regulate his blood pressure meds. They are hoping to have those well regulated by sometime this afternoon. They told us lastnight that the next 48 hours would be crucial as far as heart function.
He is pretty uncomfortable this morning so they are trying to help his pain with morphine and other meds.
We appreciate everyone's continual prayers, thank you so much. We ask that everyone continue to pray that Caleb's heals from this well and continues to make baby steps in the right direction.
Also, I want to thank my dear friend Jen for updating the blog and keeping everyone updated via email. We love you Jen and miss you very much.
God Bless you all!
God Bless Caleb!!
Monday, June 25, 2007
Please also pray for safe travels for Brian, Bernie Byrum (Sarah's Dad), and Ron and Jean Hlebiczki (Brian's parents) as they are on the road right now on their way to Duke to be with Sarah and Linda Byrum (Sarah's mom) to support Bubber.
God Bless Caleb and God Bless Sarah and Brian and their amazing families. I have to let you all know, and I am sure you will agree, that I have never seen people handle such a difficult situation with such grace, faith, love, and an amazing sense of family. The Byrum's and Hlebiczki's amaze me so and are such examples to all!! Thank you for letting us bear witness and be a part of your amazing family!!
Keep fighting Bubber, I am so sorry you have to keep going through this, but you are so amazing!!! WE LOVE YOU SO MUCH!!! God Bless Caleb!!
-Jen Straub (Aunt Jen)
Wednesday, June 20, 2007
Caleb was put on the Operating Room Schedule for heart surgery for today, however, it was cancelled due to extremely high lipase (enzyme made in the pancreas) levels. The norm should be 200-250 and Caleb's today was 2500. They have done many tests to see what is causing the high levels and visually saw the gall bladder had some sludge (hopefully he will pass that) in it and that one kidney is larger than the other (which may be the way his kidneys are). At this time, they are not overly concerned at the kidney size difference. However, they are wondering if Caleb's cyclosporine (Immunosuppresent Drug) levels are effecting his lipase because they are not at the 'therapeutic' levels. They are wondering if he is stooling out his cyclosporine because he is still having diarrhea due to the immune issues and the cyclosporine was an oral med. They have now switched the med over to intravenous and hopefully will find the right level to make it a therapeutic dose and hopefully this will decrease his lipase enzyme levels.
Caleb's lungs sound clearer and a recent CT scan showed that the fungus/pneumonia is not as bad as it was before. Let's hope it continues to clear and doesn't spread anywhere else. He is coughing which is a great sign.
He also had some issues with arrhythmias with his heart and they are watching that closely also. The cardiologists do not believe this has anything to do with heart failure but they will be monitoring it closely.
There have been many discussions regarding Caleb's neurological status due to his illness as a catscan did show that the brain has suffered some 'injury'-the brain seems smaller. The neurologists say we should know with time how this will effect him. HOWEVER, Caleb did respond to my voice today and turned his head in my direction. He is still not tracking but we are hoping that this will come with time. He EVEN smiled and giggled today when I said something in his ear.
So where do we go from here....WOW what a question. The first step would be, if the lipase level should go down they will probably put Caleb back on the OR schedule for his heart surgery. One day at a time, then we will talk about what is to follow later.
There have been many things that have occurred that I have left out but I am trying to remember as much as I can.
We did have a couple visitors which was very nice. The minister from my dad's church, Larry Kline, came down to visit and brought my dad and we were able to pray in Caleb's room and spend some time with Larry and go to lunch and dinner. What a very nice visit. Thanks Larry and thanks everyone with Vance Church. And today Jo and Rick Terry stopped by on their way home from Hilton Head to peak through the window to see Caleb and to take my mom and I out to dinner. It was great to see them!!! Thank you both for coming to visit.
Emotionally how are we doing? That is the question we get asked all the time. Easy answer - you do what you have to for your child. He is a strong little boy. It amazes me so much what a fighting spirit he has. Every time before we leave his room, I tell him how proud we are of him, how much we love him, to keep fighting, give him a kiss from me and from Brian, and God Bless him. In addition, it is also very hard that Brian is at home and so far away. Caleb and I miss him so much. It would be so nice if Brian could be here with us more than just for a couple days at a time. It is also very hard on Brian. He is doing what he has to for our family. Of course, as you all know West Point Products fired me (that's a whole other discussion) when Caleb first got sick and was in the ICU in Pittsburgh, so Brian is our only income and has been since then. Imagine how tough it would be for your son to be ill and you are so far away and to get updates over the phone and to not be there even though you desperately want to. If there was some way I could get him here so he could stay down here with us I would!!! I love you Brian, thanks for what you are doing for us, we miss you very much.
Again, thanks to everyone for the cards, emails, phone calls, etc. We appreciate the wonderful support system you all have provided for us.
God Bless Caleb!!
Sunday, June 10, 2007
Thank you all.
From Mighty Max's website:
prayers for caleb
Our friend, Caleb, really needs your prayers. He is having a very difficult time and is now facing open heart surgery in the coming weeks. While this is desperately needed (doctors believe he may be in early stage of heart failure), his body is not at its strongest and therefore recovery will be much more complicated.Please pray for comfort and healing for Caleb and peace and wisdom for the parents and doctors. Thank you everyone. We are very worried about our amazing lil' friend.
Posted by Maxwell and Amy at 12:16 AM
From Eva Nicole Masionis' website:
Sending prayers to heaven!!Date: 6/10/2007
Today we are at my parents house and my mom came home with a balloon so the kids could send it to heaven to ask for more prayers for sweet Caleb. What a sweet thing to do!!
Hugs and Kisses,Eva Masionis and Family
Please note on Eva's website there is also a video of the children releasing the balloon please visit her site by following the link with Eva's name above to see the video.
God Bless Caleb!!
Friday, June 08, 2007
The meeting was held today and the docs pretty much said that Caleb's heart may be in the early stage of heart failure. Therefore, they believe the next step needs to be open heart surgery to fix his ASD (his hole) and his tri-atriatum (the membrane that is causing a division in is his heart that is making the heart look like it has three atriums). They believe this has to be done to prevent any more damage to the lungs, help him in the lung run for the Thymus transplant, and to help him recover quicker from any possible future infections.
Of course with any open heart their are concerns:
- He will be on bypass and that does cause extra fluid in the lungs after transplant. This is a concern because Caleb already has some lung issues going on. He will probably not be the typical post op patient due to the lung issue. They said he could possibly go back on the oscillator again due to the fluid.
- Caleb has fungus in his lungs. So they want him to complete his full course of antifungal meds before going to the OR. The concern with this is they use a piece of foreign material to close the hole. If fungus attaches to the material it would be a very serious situation and life threatening.
- Caleb has other things that are going on right now that are not optimal for surgery: nutrition, elevated liver enzymes, etc. So we are trying to optimize these situations for the surgery also.
They did say today if the course of antifungal meds were done today they would have him in the OR as soon as they could. They are hoping that he can go to the OR within the next 2-3 weeks. I am leaving some things out but the main thing they stated today is that we are not starting out in 'optimal' conditions so we are not sure what his recovery will be like for the open heart.
So as always we would appreciate everyone's continual prayers for our Little Bubber.
God Bless Caleb!!
Thursday, June 07, 2007
We have a meeting tomorrow with Cardiology, Allergy and Immunology, and the Critical Care Team, to get everyone on the same page and to see what the plan of action is in regards to the MRI and Cath I discussed in yesterday's post.
Finally, Brian was able to come down today, thanks to Jeff Petzack, to be here for the weekend. We have missed him very much!!! Thanks again Jeff we appreciate it so much!!!!!!!!!!!
Again, thank you all so much for your continual prayers. We appreciate it sooooo much!!!!
I will post tomorrow night and let you know what happens in the meeting and see what the plan is in regards to checking Caleb's heart, brain, and other related issues.
God Bless Caleb!!
Wednesday, June 06, 2007
They are now wondering if Caleb is in Congestive Heart Failure. They have requested the Cath lab reports from Pittsburgh and are considering doing another Cath Lab here as he was so sick and things may have changed with his heart during this time.
In addition, they said his lungs don't look any better, in regards to the fungus, by x-ray. However, he is still extabated at this time. However, they said the fluid around his lungs is worse.
In addition, they are starting to get more concerned about his eyes. Opthamology came and did an exam today and said that they do not believe the fungal infection has spread to his eyes and his optic nerve looks good. But, they are wondering if his fungal infection has spread to his brain. So they are going to do a lengthy MRI that will check to see if the infection is in his brain, hopefully sometime tomorrow. They may try to do the MRI and Cath Lab tomorrow.
Dr. Markert (the Thymus Transplant doctor) told the critical care docs that she is not sure Caleb would survive the Thymus Transplant in the condition he is in now.
So that is where we are right now. We are very nervous and scared!!!!! Please continue to pray for Caleb.
God Bless Caleb!!
Tuesday, June 05, 2007
His liver enzymes went up slightly today. The TPN (IV nutrition) was rehung (he was off it for a couple of days) lastnight so they are trying to see if the TPN made his levels go up so they are going to 'cycle' (not let it run over a full 24 hours - first time they are doing this in the PICU - usually they only cycle TPN on the floors) his TPN. So we will see in the morning if this effects his levels in any way.
They have started to wean his morphine because they are hoping his worst part of the withdrawal is over. His eyes are still not normal so we are hoping they will come back to normal once the meds are out of his system. However, he is still on Valium and Methadone to help him with his withdrawal also.
They have added an oral blood pressure medicine to get him off of the IV blood pressure medicine. They have also stopped his medicine that was a treatment for 'asthma' acting lungs. He is still on antibiotics though for his fungal infection and preventive measures also. They are many other meds that they have changed/stopped as Caleb was a VERY VERY sick boy and still is sick but we are hoping he continues to make baby steps in the right direction.
Again, I want to thank everyone for the phone calls and the emails I am trying to get to them as I do not leave Caleb's room in the PICU often as I am sure you understand. Thank you all again so much. God Bless you all!
God Bless Caleb!!
Monday, June 04, 2007
We had some concerns today as Caleb is a liter positive on fluid at least it is not almost 5 liters positive like he was before. So what is causing the overload....not sure...could be an infection (yet his white count is stable for now), could be his heart (but his echo looks to be like his last one before he got real sick), or it could be the lack of nutrition as he has been off of intravenous nutrition and not getting a high dose of oral feeds through his ND (duodenum) tube. They are providing him diuretics to see if he will urinate. They tried lasixs and it didn't work so they are trying two different meds so hopefully that will work. The last thing we need is additional fluid to get into his lungs along with the fungus that is in there. So we are praying he can get rid of this extra fluid.
We would also like to thank Jeff Petzack for getting Brian a flight down here this weekend. Thanks so much Jeff we appreciate it so much.!!!!
In addition, we have met two other families in the PICU whose children could also use prayers Madeline Lynch and Parker Ramsey. God Bless them and there families.
In addition, I have just found out that our hotel has Internet access so I definitely will be able to update more often. I miss posting notes on our CHARGEr friends websites too so I am going to try to get back up to speed with that also.
We miss everyone very much. Thank you for the continual prayers for Caleb and our family.
God Bless Caleb!!
Saturday, June 02, 2007
In addition, Caleb's EEG (brain wave activity) test came back and there is no signs of seizure activity.
He has been sleeping off and on the last 24 hours which is much needed due to the lack of sleep and withdraw. So we are hoping that he will soon get through that but it will take awhile as he is still on morphine, quanidine, methadone, and valum to help him withdraw. The morphine will be the first drug they try to wean once they feel his withdrawl is getting better. We are hoping that his abnormal eye activity is related to the withdrawl also.
As far as updates that is all I have for now, but he is STABLE and STABLE is great!!!
God Bless you all and thank you for your prayers.
Kiss your children often-don't take anything for granted. Cherish the smiles, the laughs, the funny faces, the eyes opening, cherish every little thing. Don't take anything for granted!!!
God Bless Caleb!
Friday, June 01, 2007
God Bless Caleb.
Also the address is the same as before just put PICU instead of the room number.
**On a side note I have just found out one of our little CHARGEr friends needs prayers he is in the ICU after having his much needed heart surgery. Please visit Tate's website, link is posted up at the left. Also, please say prayers for our buddy Mighy Max as he is having some respiratory issues. God Bless you all we are praying for you.