Well through multiple emails today with Dr. Markert...we have just received word that Caleb responded to the third tetanus shot. So his immune system is showing signs that it is starting to work!!! Hallelujah!! Per Dr. Markert's testing protocol a 20 fold response is needed; he was slightly under that but better than the control. I was somewhat confused by her response as it sounded pretty good, we just didn't know how good. I was not going to let myself get excited until I heard more. I then responded to her asking her 'can we open the bottle of champagne we have been saving' she quickly responded 'yes, and maybe I'll have a glass of wine myself.' WOW WOW WOW his immune system has started to work. Because his response wasn't up to protocol level he will get another tetanus shot in February along with another batch of blood work in March or April and then we will see how he responds to that tetanus also. She didn't go into much more detail: regarding his isolation precautions, visitors, etc. But we are hoping those details will be expanded upon soon; possibly after the next tetanus shot when he hopefully hits the protocol level. She also said in her last email that she will keep Caleb on those pseudo-immune system infusions until September; then in January of next year she will give another tetanus vaccine to see if he can make antibodies (the other part of his immune system that is the immune system's 'memory', B-cells, that will now need to start working). If he makes antibodies then he will not need the pseudo-immune system infusion anymore. She then went on to say 'we can save another bottle of champagne for that occasion.' So...no, we are not out of the woods, but his immune system is starting to work!! WOOHOOO!
God Bless you all!!
God Bless Dr. Markert and her team!! We love you Aunt Louise!!
God Bless Caleb!!
Wednesday, January 21, 2009
Tuesday, January 20, 2009
Line Pulled
Fortunately, Caleb's wonderful Dr., Dr. Frangiskakis, called today and after I described to her how the line looked and where he was in his course in antibiotics we decided to pull the PICC line. So needless to say, after I got off the phone with her it was pulled. Again, we will have to watch him closely and pray that over the next couple days he does not present with an infection. Even though this is a nervous time as we are watching him closely and praying for no infection; it is also a big step for Caleb. . . this is the first time we are going to try to not re-place a central line. If he does okay without a central line, this would be the first time he would be without one since he was 6 months old.
Also, many of you have been sending me emails asking about the Immune Tests results...we still haven't heard anything. I am hoping we are going to hear something soon and praying that it is good news! I promise as soon as I hear anything I will post the results!
Again, thank you all for the emails, prayers, and concern.
God Bless you all!!
God Bless Caleb!!
Also, many of you have been sending me emails asking about the Immune Tests results...we still haven't heard anything. I am hoping we are going to hear something soon and praying that it is good news! I promise as soon as I hear anything I will post the results!
Again, thank you all for the emails, prayers, and concern.
God Bless you all!!
God Bless Caleb!!
Monday, January 19, 2009
Darn Central Lines
So it stinks that I have to start this post off this way, but Caleb's new line doesn't looks so great! We called the doctors (Diagnostics, Infectious Disease, and Allergy and Immunology) and we will be keeping them informed of any changes throughout the night and we have been told that, of course, if Caleb's demeanor should change in anyway to get him to the hospital ASAP. We also drew cultures to see if anything is growing in his line. We are praying hard that his skin is just irritate and not infected. He has until Wednesday at midnight for the course of IV antibiotics to be done, and then we are pulling the line after that dose. Unfortunately, these antibiotics don't cover all bugs, so there is a chance he could get another bug and get another infection. We are praying hard that he stays infection free! I will definitely keep you all posted!
God Bless his IV!!
God Bless you all!!
God Bless Caleb!!
God Bless his IV!!
God Bless you all!!
God Bless Caleb!!
Thursday, January 15, 2009
Home Sweet Home but Stressed
Hello all....I am happy to report Caleb is home and I want to thank you all for the prayers!
Updates: He came home with an IV that is a little more permanent than one that you would get if you were in the ER or admitted so that I can administer his IV antibiotics here at home for his sepsis. Poor little guy was very sick! This was his third life flight. I told him when we were boarding the helicopter that I would like our next helicopter ride to be a sight-seeing one and not for medical reasons. The flight crew was awesome and he did get more momentous from them, t-shirt and pin, proving that yes once again he rode on a helicopter. Thank you guys for taking such wonderful care of our son!
While we were there we took care of a couple other items, other than those that were involved with the sepsis (i.e. water retention, oxygen saturations, heart rate, etc) He started to drop his oxygen saturations (d-sat) and also started to brady (drop his heart rate). He was put on oxygen one night to help keep his saturations up and now is on a pulse oximiter (instrument that measures heart rate and oxygen saturations) here at home to see how is trending. He is now on another nasal spray to see if that will open up his nasal passages and help him breathe at night. Lastnight, he did saturate at 100% from time to time and I was so excited He continues to have a low heart rate. He has done this before and the cardiothoracic surgeons did tell us, after his open heart surgery, that as long as he is perfusing well (extremities stay warm) there is not a concern. I am hoping with a couple more days of recovery, here at home, that his heart rate will normalize. However, we will probably need to schedule a clinic appointment with cardiology in the spring (as long as nothing emergent arises) to have a follow up as he did have open heart and he should be checked in clinic periodically. Also, he was fitted for a new hearing aid mold as he lately has been taking out the hearing aid very frequently and never did this before. We are hoping that once his immune system kicks in we can have his hearing checked in clinic as all his hearing tests have been performed under General Anesthesia and we are wondering if the test in clinic may yield different results. His Mic-key button was changed out as he is a growing little boy and needed a bigger size to accommodate his growth, no failure to thrive anymore! We have also transitioned him to a more age-appropriate formula to feed him through his feeding tube. Right now we cannot get a hold of how his gut is handling it, as in the past he has issues absorbing formula due to his immunosuppression, because he is having diarrhea due to the strong IV antibiotics he is on. So once the antibiotics are done, we will get a better idea of what is causing the diarrhea. So we are definitely not out the woods and our stressed as we listen tot he monitor alarm, but it is nice to be home and we pray that Caleb's condition continues to improve.
As stated in the last post, our poor dog Saba, new something wasn't right with Caleb when he got sick at home. She followed me from room to room as we were getting stuff ready to take him to the ER. My mom and dad watched Saba while we were at the hospital with Caleb. My mom called one day while we were there to inform us that Saba was getting sick and not holding anything down. We had her checked at the Vet, wonderful Karl, to see if she was okay as she is getting older. After some normal bloodwork results, we are beginning to wonder if Saba is suffering from stress and anxiety like we do. She is resting now at my feet, and I am hoping she feels better very soon.
As if our life isn't stressful enough one additional stressor seems to be hanging on. I debated about posting it, but need to vent...As you all know we fired one of our nurses back in September due to ongoing questionable and unethical actions. We then asked our nursing company to let her know when they were terminating her employment from the company to stop contacting us. Unfortunately, several months later she continues to feel justified to act this way and to harass our family from afar. When she worked here, she gave Caleb a highchair, AS A GIFT. She recently had her friend write a letter to the nursing agency saying she wants the highchair back along with some personal items that were here. Her personal belongings, a cell phone charger and a book, were returned but the highchair was a gift and we didn't feel it was right that she was trying to take a gift back so we did not give that to her. Her friend then wrote another letter to the nursing company saying she wants the highchair back and that it wasn't a gift. Are you kidding me?!? Honestly, I feel sorry for her...I really do. It is sad that she feels justified in her actions to feel the need to bother our family, like we do not have enough to deal with. I don't know what we are going to do...I don't think it is right what she is doing...but in the same regard...maybe if I give her the gift back she will leave us alone! If we could get a guarantee that if we gave her the gift back she would leave us alone, that would be a positive.
Okay enough of the venting...I feel better!
Again, I want to thank you all for the phone calls, emails, etc. I will update soon to let you all know how things are going. Thank you again for checking in on us!
God Bless you all!!
God Bless Caleb!!
Updates: He came home with an IV that is a little more permanent than one that you would get if you were in the ER or admitted so that I can administer his IV antibiotics here at home for his sepsis. Poor little guy was very sick! This was his third life flight. I told him when we were boarding the helicopter that I would like our next helicopter ride to be a sight-seeing one and not for medical reasons. The flight crew was awesome and he did get more momentous from them, t-shirt and pin, proving that yes once again he rode on a helicopter. Thank you guys for taking such wonderful care of our son!
While we were there we took care of a couple other items, other than those that were involved with the sepsis (i.e. water retention, oxygen saturations, heart rate, etc) He started to drop his oxygen saturations (d-sat) and also started to brady (drop his heart rate). He was put on oxygen one night to help keep his saturations up and now is on a pulse oximiter (instrument that measures heart rate and oxygen saturations) here at home to see how is trending. He is now on another nasal spray to see if that will open up his nasal passages and help him breathe at night. Lastnight, he did saturate at 100% from time to time and I was so excited He continues to have a low heart rate. He has done this before and the cardiothoracic surgeons did tell us, after his open heart surgery, that as long as he is perfusing well (extremities stay warm) there is not a concern. I am hoping with a couple more days of recovery, here at home, that his heart rate will normalize. However, we will probably need to schedule a clinic appointment with cardiology in the spring (as long as nothing emergent arises) to have a follow up as he did have open heart and he should be checked in clinic periodically. Also, he was fitted for a new hearing aid mold as he lately has been taking out the hearing aid very frequently and never did this before. We are hoping that once his immune system kicks in we can have his hearing checked in clinic as all his hearing tests have been performed under General Anesthesia and we are wondering if the test in clinic may yield different results. His Mic-key button was changed out as he is a growing little boy and needed a bigger size to accommodate his growth, no failure to thrive anymore! We have also transitioned him to a more age-appropriate formula to feed him through his feeding tube. Right now we cannot get a hold of how his gut is handling it, as in the past he has issues absorbing formula due to his immunosuppression, because he is having diarrhea due to the strong IV antibiotics he is on. So once the antibiotics are done, we will get a better idea of what is causing the diarrhea. So we are definitely not out the woods and our stressed as we listen tot he monitor alarm, but it is nice to be home and we pray that Caleb's condition continues to improve.
As stated in the last post, our poor dog Saba, new something wasn't right with Caleb when he got sick at home. She followed me from room to room as we were getting stuff ready to take him to the ER. My mom and dad watched Saba while we were at the hospital with Caleb. My mom called one day while we were there to inform us that Saba was getting sick and not holding anything down. We had her checked at the Vet, wonderful Karl, to see if she was okay as she is getting older. After some normal bloodwork results, we are beginning to wonder if Saba is suffering from stress and anxiety like we do. She is resting now at my feet, and I am hoping she feels better very soon.
As if our life isn't stressful enough one additional stressor seems to be hanging on. I debated about posting it, but need to vent...As you all know we fired one of our nurses back in September due to ongoing questionable and unethical actions. We then asked our nursing company to let her know when they were terminating her employment from the company to stop contacting us. Unfortunately, several months later she continues to feel justified to act this way and to harass our family from afar. When she worked here, she gave Caleb a highchair, AS A GIFT. She recently had her friend write a letter to the nursing agency saying she wants the highchair back along with some personal items that were here. Her personal belongings, a cell phone charger and a book, were returned but the highchair was a gift and we didn't feel it was right that she was trying to take a gift back so we did not give that to her. Her friend then wrote another letter to the nursing company saying she wants the highchair back and that it wasn't a gift. Are you kidding me?!? Honestly, I feel sorry for her...I really do. It is sad that she feels justified in her actions to feel the need to bother our family, like we do not have enough to deal with. I don't know what we are going to do...I don't think it is right what she is doing...but in the same regard...maybe if I give her the gift back she will leave us alone! If we could get a guarantee that if we gave her the gift back she would leave us alone, that would be a positive.
Okay enough of the venting...I feel better!
Again, I want to thank you all for the phone calls, emails, etc. I will update soon to let you all know how things are going. Thank you again for checking in on us!
God Bless you all!!
God Bless Caleb!!
Saturday, January 10, 2009
Another Life Flight
So on Monday afternoon Caleb was getting a bath and was in a great mood at the beginning of the bath, giggling and playing. By the end of his bath, 10 minutes later, he started to get very fussy. The nurse and I got him dressed and he still was pretty upset. Our sweet dog, Saba, was right by his side the whole time he was fussing. So by the time we got him downstairs, he started to get very lethargic and turned a shade of gray. I then asked the nurse if she could take his temp before she left. Unfortunately, he was running a temperature of 103.2 and his status continued to worsen, he got very 'floppy' and unresponsive. We called his doctor, Dr Susan Frangiskakis, and she told us to go immediately to the local ER so they could get him stable for transport. He was there long enough to get some blood work drawn, start fluids, and antibiotics. It was then decided that due to his vitals, unbelievable high heart rate, low Oxygen levels, and deteriorating neurological status that he needed to be transported by helicopter. Thankfully, Children's transport got their and were awesome as always! They got him on the helicopter and he was doing pretty well. We found out there were no PICU beds available so once we landed he went to the ER. From their he went under an evaluation and they believed his central line was infected, therefore causing sepsis (bloodstream infection). He was stable enough to go to a regular floor under close monitoring. Sure enough the line cultures came back positive for a nasty bug that says makes kids feel pretty sick, one of the worst bugs. So he slept for a couple days and the second day he was here they took him to surgery to remove the central line. Today was his best day as far as his personality but we still are having some issues. He is not keeping his Oxygen saturations up and we are not sure why. He is also bradying (dropping his heart rate) but this is not a concern as long as he is perfusing well (his extremities are warm). They did a chest xray to see what is causing the low O2 levels and there is a questionable spot that we are watching. They will be watching him tonight and based upon what his levels do the docs will order certain tests. He is schedule to get another line, not as permanent as the broviac yet not as temporary as a peripheral so if he can get discharged I can administer his IV antibiotics at home. So that is where we are for now...I have probably left some things out and have probably made some typos. I am sorry I am trying to do a very quick update here at the hospital.
Thank you for all the prayers!
God Bless Caleb!!
Thank you for all the prayers!
God Bless Caleb!!
Friday, December 26, 2008
Christmas at HOME!
Okay, so it is official! Caleb spent his first Christmas at home! It was amazing and emotional to say the least! We had a great time! Unfortunately, both sets of Caleb's grandparents were sick so they were not able to come as we cannot take the risk of possibly exposing him to something. We will do Christmas with them when they are better.
Caleb woke up bright and early Christmas Eve, which was kind've ironic; like he knew how momentous this Christmas was. Brian and I, being the cautiously optimistic people we are, did not say anything about Christmas being at home until it was actually Christmas day and we were at home. We know how quick the situation can change. It was so much fun to get Caleb into bed Christmas Eve and to know we could run downstairs and play Santa! We had a ball. The next morning Caleb woke up early again and we brought him downstairs and dove right into the presents! It was so much fun! Due to his sensory aversion issues, it did take him awhile to 'warm up' to each gift. But when he did he had a ball! So darn cute! We also were blessed, yet again, by all of our wonderful friends by gifts on our front porch throughout the day. Thank you all. Caleb rarely naps however, yesterday he needed one. I rocked Caleb to sleep in his rocking chair in his room yesterday for his nap (which is still a new thing for us as we didn't get to do this while he was in the hospital-so I love when he settles and lets me rock him). He had a great nap and then we were ready to watch the story on Channel 7 regarding Caleb. It was beautiful Stacy did a great job, Thanks Stacy! She is working on posting a link to their website and once they do I will link it on this webpage for those of you that are out of town and did not get to see it!
I put a montage together for you all! It is too cute! Merry Christmas everyone and Happy Holidays! Check back for the news story link!
God Bless you all!!
God Bless Caleb!!
Caleb woke up bright and early Christmas Eve, which was kind've ironic; like he knew how momentous this Christmas was. Brian and I, being the cautiously optimistic people we are, did not say anything about Christmas being at home until it was actually Christmas day and we were at home. We know how quick the situation can change. It was so much fun to get Caleb into bed Christmas Eve and to know we could run downstairs and play Santa! We had a ball. The next morning Caleb woke up early again and we brought him downstairs and dove right into the presents! It was so much fun! Due to his sensory aversion issues, it did take him awhile to 'warm up' to each gift. But when he did he had a ball! So darn cute! We also were blessed, yet again, by all of our wonderful friends by gifts on our front porch throughout the day. Thank you all. Caleb rarely naps however, yesterday he needed one. I rocked Caleb to sleep in his rocking chair in his room yesterday for his nap (which is still a new thing for us as we didn't get to do this while he was in the hospital-so I love when he settles and lets me rock him). He had a great nap and then we were ready to watch the story on Channel 7 regarding Caleb. It was beautiful Stacy did a great job, Thanks Stacy! She is working on posting a link to their website and once they do I will link it on this webpage for those of you that are out of town and did not get to see it!
I put a montage together for you all! It is too cute! Merry Christmas everyone and Happy Holidays! Check back for the news story link!
God Bless you all!!
God Bless Caleb!!
Wednesday, December 24, 2008
Merry Christmas
We just want to wish everyone a Merry Christmas and a Happy and Healthy Holiday!
Also, I just got word from Stacy Rich that Caleb's story will air tomorrow on some, maybe all, of the evening newscasts on Channel 7 at 5,6,10, and 11 and may air on Friday morning's show (5-7). She again appologized that she wasn't given more time for his story, but, again it is enough time to thank you all for helping us the last two years and to get his story known to those who still don't know him. Sorry I do not have defnite times, but just check tomorrow evening and Friday morning.
God Bless you all!!
God Bless Caleb!!
Monday, December 22, 2008
Some Media Coverage and Another Video
Hello all...Well I know some of you who know are anxiously awaiting the details regarding the specifics of Brian's and my meeting today with a local news reporter here in the Valley. It went great! We met with Stacy Rich from Channel 7. She was so nice and made us both feel very comfortable, thanks Stacy! Unfortunately, she did let us know that she thinks she will only be allotted approximately 3 minutes for the piece even though she asked for more. Not a whole bunch of time, but yet enough to get his story out there and known to those who don't know him and for us to be able to thank wonderful people like you all for being such a wonderful support system for our family. She did say that she thinks it will air on Christmas Day and will be available online. She is going to let me know when she finds out the definite air time and date, and I will definitely let you all know and will see if I can post the link the day it airs on here for those of you who are not in Wheeling so you can see! Who knows maybe when this story airs, there will be others who will want to do stories also. Thanks again Stacy, it was so nice to meet you!
Other updates:
Caleb's line looks less red! We are hoping and praying that it continues to improve and thank you all for your prayers and thoughts you have been sending our way! We are so appreciative.
Caleb continues to pull up to stand as shown in the previous post's video and he is getting quick at it too!
He also, ready for this, has been putting teethers in his mouth AND biting on them, which is a big step as far as sensory input.
He has also began to pretend spit. I know how many parents are happy that their child is spitting...but this is such a big step as you have to push your tongue against your cheeks and lips to do this, so I will let him spit all he wants! We are still working with feeding and drinking . He continues to tolerate cups and plates better in his area which is amazing.
Caleb received his pseudo immune system infusion (IVIG) last Tuesday. We are tentatively planning to start his SUB-Q infusions, as discussed in an earlier post, this week. I have been trained on how to do this too so I will let you know how it goes. He will then get one infusion a week! This method has its pros and cons. IVIG is a very strong drug and when infused even in a central line (IV) adverse reactions (elevated temperature, respiration / breathing issues, severe rashes, etc) can occure. Therefore, one of the bad things about SUB_Q infusions is that since he will be getting it in his fatty tissue rather than in his central line(IV) these reactions can be more intense especially in regards to rashes on the skin. So that is definitely one thing we will have to watch and see how he tolerates it! The very big pro about SUB-Q infusions is that because it is given on a much more frequent interval, as comparted to the central line infusion, his levels will not be allowed to 'bottom-out' and should stay at a higher level; which in theory will hopefully provide him better protection.
I drew blood for his 3 round of Immune Test last Tuesday! It has not been a week and I already have become impatient and am wishing that by some miracle the results would come back a lot sooner (as the results usually take 4 weeks) yielding good news! We are praying that (as one of Caleb's doctors said) the third time is the charm! Come on T-cells!
As promised a video of little man! Again, sorry it was a quick video grab with my cell phone so the quality is not the best!
God Bless you all!!
God Bless Caleb!!
Other updates:
Caleb's line looks less red! We are hoping and praying that it continues to improve and thank you all for your prayers and thoughts you have been sending our way! We are so appreciative.
Caleb continues to pull up to stand as shown in the previous post's video and he is getting quick at it too!
He also, ready for this, has been putting teethers in his mouth AND biting on them, which is a big step as far as sensory input.
He has also began to pretend spit. I know how many parents are happy that their child is spitting...but this is such a big step as you have to push your tongue against your cheeks and lips to do this, so I will let him spit all he wants! We are still working with feeding and drinking . He continues to tolerate cups and plates better in his area which is amazing.
Caleb received his pseudo immune system infusion (IVIG) last Tuesday. We are tentatively planning to start his SUB-Q infusions, as discussed in an earlier post, this week. I have been trained on how to do this too so I will let you know how it goes. He will then get one infusion a week! This method has its pros and cons. IVIG is a very strong drug and when infused even in a central line (IV) adverse reactions (elevated temperature, respiration / breathing issues, severe rashes, etc) can occure. Therefore, one of the bad things about SUB_Q infusions is that since he will be getting it in his fatty tissue rather than in his central line(IV) these reactions can be more intense especially in regards to rashes on the skin. So that is definitely one thing we will have to watch and see how he tolerates it! The very big pro about SUB-Q infusions is that because it is given on a much more frequent interval, as comparted to the central line infusion, his levels will not be allowed to 'bottom-out' and should stay at a higher level; which in theory will hopefully provide him better protection.
I drew blood for his 3 round of Immune Test last Tuesday! It has not been a week and I already have become impatient and am wishing that by some miracle the results would come back a lot sooner (as the results usually take 4 weeks) yielding good news! We are praying that (as one of Caleb's doctors said) the third time is the charm! Come on T-cells!
As promised a video of little man! Again, sorry it was a quick video grab with my cell phone so the quality is not the best!
God Bless you all!!
God Bless Caleb!!
Saturday, December 20, 2008
Line Update and a Video
Well the line still looks about the same and unfortunately due to the frequent dressing changes his skin that is underneath the dressing is very irritated also. Poor guy! So dressing changes are pretty painful for him because you use alcohol to clean the site. However, it does look slightly less red than lastnight when I put Caleb into bed. So I am praying that the redness continues to lessen!
We drew blood for Caleb's Immune Tests on Tuesday so hopefully we will hear in a month that his Immune System is working! We are praying that the third time is a charm!
I have a little video below that I thought everyone would enjoy. It is not the best quality as I took it with my cell phone, but I thought everyone would want to see! Enjoy!
God Bless you all!!
God Bless Caleb!!
Friday, December 19, 2008
Prayers Needed
Well all...a couple days ago Caleb's central line site did not look so great. The area right around were the IV goes into his chest was very red and warm to the touch. We called the docs and they then told us to change the dressing daily and to put bacitracin (antibiotic ointment) on the area when we change the dressing. The warmness at the site has lessened and we are praying that the redness goes away and that Caleb does not spike any temperatures. Line infections, for kiddos with in an immune system is scary enough, but without an immune system to fight off these bugs is even scariers. So we are asking for prayers please that the redness goes away and that this is a minor irriation and nothing else. I will keep everyone updated!
God Bless you all!!
God Bless Caleb!!
God Bless you all!!
God Bless Caleb!!
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