Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"


Thursday, September 24, 2009

IgG Level is Back

Well here is the email I received today:

'Well, our numbers came back only a little better--his IgG was 483. However, Dr. Markert feels that as long as he is in the normal range for his age (and he is--it is 391-1070) that's good enough so no more IVIG. (She feels the reccommendation for >600 is actually more applicable to > older patients.) We can check it again in a couple of months just to make sure it doesn't drift down over time. His tetanus antibodies were normal so she says he should proceed with his normal childhood immunizations (BUT NO LIVE VACCINES). Please ask the pediatrician to give all doses of the killed vaccines (as opposed to the "catch up" schedule which omits some doses based on age) And as we discussed, he should get the seasonal flu vaccine and the H1N1 vaccine when they become available. Please let me know when you schedule an appt with your pediatrician as we will want a blood sample just prior to his immunizations and I will ask them to repeat the thyroid profile. The one in the hospital was reported as "quantity not sufficient".
Stephanie'

So we of course have email them back with some questions! But this is great news! I don't have to stick him anymore every week for the IVIG infusions! He is going to get immunizations?!? Really?!? I never thought this day would come! I can't wait for more exciting milestones to come for his immune system! Keep working Immune System and Thymus! One more step closer to normalcy! Go Caleb! We are so proud of you!

God Bless you all!!

God Bless Caleb!!

Monday, September 21, 2009

My Big Boy **Updated**

After all the aversions...who would have thought?!?! Yes, we still will be working on drinking as he hates that, but he used to hate eating too and would be so scared of it! Look at this!

video

**Update: So not only did Caleb feed himself lunch, he fed himself dinner and all of it. Also, he feed himself with not one spoon, but two! I was shocked. I gave him two spoons to see if he prefered one over the other and he liked both! Too funny! He did let any go to waste either. He also ate TWO pudding cups for his bedtime snack! No failure to thrive anymore! He wiped his mouth and hands too when I asked him! Wow Caleb you are awesome little boy! Now, I just need to continue working on getting him to drink.
video

Thank you all for enjoying all these milestones as much as we do!**

God Bless you all!!

God Bless Caleb!!

Waiting game

Still no update on the IgG level! I am not really expecting to hear anything though until earliest on Wednesday! So we are praying hard for an awesome IgG level.

He is healing nicely from his surgery. You can definitely tell that he is still sore from the surgery but the incisions look good so far and the bruising is lessening.

We have met all of Caleb's new therapists through he school system. I hope and pray that they can provide the appropriate resources to help us work with Caleb and his delays.

He is getting more and more mobile everyday. He is climbing all over the place. Now if I could only get him to walk! We are looking into walkers that Caleb wouldn't have the possibility to sit down, that somehow we could 'brace' him into his walker. The one he has now, isn't working. He just sits down when we stand him up! Hopefully, we can find one that will work and will get him mobile.

I continue to work on different foods with Caleb and he is doing well. So amazing our little boy is getting better and better every day eating. We continue to work on the drinking. He definitely has a fear of drinking and I continue to work on that with him.

We are still waiting on flu vaccines for Caleb. He is on the waiting list at his pediatrician's office for the regular flu shot. As far as the H1N1 vaccine, it isn't even available until mid October. I called the local health department to see if I could start whatever paperwork is needed so Caleb could get his shot as soon as they get the vaccine and the lady was of no help on what I need to do to get him a vaccine.

Well sorry for the quick update but little man is into stuff and I gotta go! Have a great day!

God Bless you all!!

God Bless Caleb!!

Friday, September 18, 2009

Bloodwork

So the immune level we have been waiting on came back. Children's ran this lab and was to send the info to Duke. Please read the email I got from Dr. Markert's head nurse, who is also a good friend, today below:

Dear Sarah,

I spoke with Dr. Rao this morning about Caleb's labs. The IgG level was reported at 444, which is low but there was a disclaimer that they had "insufficient sample to properly run the test so the result may not be valid. " So basically, it doesn't really tell us anything. However, I had frozen away some serum from the blood sent to us so I will have them run an IgG on it here and we'll see what we get. I think they run the test on Mon Wed Fri so I may have some results by the middle of next week. So sorry, I know the waiting is killing you but I want to make sure we have a valid result before we act on it either way.

So...here we are...I did some research and the normal range that I found was 620-1400. I pray that the result from Children's is wrong and that his IgG (major antibody found in the blood that fights infection) level is not really that low.

I will post the Duke IgG level as soon as we get it!

God Bless you all!!

God Bless Caleb!!

Wednesday, September 16, 2009

Surgery

Well yesterday was a very long day for all of us.

We found out early afternoon on Monday that Caleb was going to be the first case on the OR schedule. Which was great news for us as: 1. this was the first surgery that we had to deal with Caleb possibly getting hungry during the wait as he now eat some by mouth and 2. that hopefully we would get home early as we live about a little over an hour away from CHP.

So we got up at 4:00 a.m. yesterday morning so we could get on the road by 5 as we had to be at CHP by 6:30. This surgery was at the new Children's too, so we also had to realize that we would not be used to the flow of operations, waiting areas, etc. We got there and checked in and of course we got the normal stares, as our child is in a stroller covered by a rain cover to protect him from respiratory droplets. It is very hard to put a pediatric mask on Caleb now as he is older and rips it off almost right after I put it on.

So we got him back into pre-op about 7:00. (*The subject of the reverse isolation precautions did not go as well as I had hoped. I think it was probably easier to enforce when he was inpatient as when he was inpatient they had a HUGE note on his chart about the precautions and when the nurses would take him to pre-op when he was an inpatient they would make it very clear about the precautions and thus others continued the information trail when they moved him throughout the hospital. So it could have been better as far as the isolation precautions for Caleb*) The surgery was supposed to entail: a look at his ears and new tubes as children with cleft-lip and palate will always need tubes, circumcision, blood draw for Duke for Immune bloodwork, and to pin down a undescended testicle (testicle is sitting a little high. They pin them down so the normal testicle exams can be performed accurately). About 7:30 we had signed all the consents. I felt bad as Caleb started to sign 'eat' obviously he was hungry. As bad as it was that he was hungry, it was exciting at the same time that he was signing that he was hungry as this is the first surgery that we had to deal with the fact that Caleb may be hungry as he has started to eat by mouth since his last surgeries. Around 7:45 they asked us (so they could limit the exposure to Caleb) to administer some Tylenol and Verset (spelling?-a medicine to help him relax) into his G-Tube/feeding tube. The pre-op Verset was new to us as in the past Caleb was in-patient, had an IV, so they would administer the relaxation meds when he got down to the OR. So it took about 10 minutes and Caleb was RELAXED. It was sad yet cute at the same time. He seemed drunk. So 8:30 they took Caleb to the OR. We got to walk with him to the OR as we have done in the past. Caleb has been through so many surgeries I can't even count: open heart, gall bladder removal, multiple sets of tubes, multiple line placements, Thymus transplant, two separate Nissan wraps (stomach surgeries), two separate shunts on his brain placed, just to name a few. This surgery wasn't any easier when I had to leave him. Even though he was relaxed he kept looking back at me and Brian when they were pushing his crib down the hall. It broke my heart. So once we checked into the waiting room, Brian ran down to the cafeteria to get us some breakfast. While Brian was gone our wonderful friend, Dr. Otteson, came out to let us know he was done with Caleb's tubes. I was shocked at how quick he got the tubes done. He said that Caleb did great with his part and his ear canals actually were bigger this time so Caleb didn't make Dr. Otteson work so hard to get this set in. Dr. Otteson has put the other sets in and Caleb has been known to have very narrow ear canals and we weren't sure if this was CHARGE related or typical age-related canal size. So this was a good sign that the canals seemed bigger. He then said that they were trying to find a vein to draw his blood for Duke. He said 'boy that is a lot of blood they want' and it was. I heard the order and that was probably the most blood to date that they needed for Duke. I used to draw the blood, when he had his central line at home, and then I would draw about 4 tubes. (*I later found out this order was double the amount and they stuck him about 18 times to try to get all the blood) So I had assumed the next part of the surgery had started. About 5 minutes later I heard the gentleman ask another set of parents if they were the Hlebiczki family and I let him know I was. He then told me that the OR was on the phone and needed to talk to one of the parents. My stomach dropped. They got the Urologist on the phone and he said that everything was find but now that he had been able to a more thorough exam he noticed that both testicles were a little higher up than he liked and he would like to pin them both down while he had Caleb under GA (general anesthesia) now rather than waiting to do it in a separate surgery. So I consented over the phone and they proceeded. Brian came back shortly after that happened and I told him the updates. About a hour and half later the surgeon came out and let us know that he was done and that Caleb did well and they decided to do a block (numbs the area where they operated) to help with the pain after the surgery) as they did more than planned. We waited about 45 minutes longer and we were able to go back to be with Caleb in recovery! The new hospital is so much nicer. In this hospital they have isolation rooms so we were able to be with Caleb during recovery as before they had to recover him in the OR (as their recovery room was one big room and that doesn't work with the isolation precautions)with an OR nurse and we couldn't see him during then as we can't be in an OR. He was still asleep and we got the normal run down of what they did. We got to look at what they did and I cringed. He looked like a pin cushion and sore. Thank goodness for that block as he was really numb. We then moved to stage two recovery and we had to feed him 4 ounces via his g-tube before we could leave. He was very cranky at first, but we think that was the anesthesia as he was numb due to the block. We finally were given the OK to go home. We couldn't believe it! WE GOT TO GO HOME! We never had done that!
We got home and Caleb acted like nothing had happened in that regard. We had assumed by then that the block had worn off. Well, not so much. I found out this morning that the block must had lasted longer than what we though because the poor guys is very uncomfortable this morning. I have cancelled all his therapy for this week and I am letting him chill and recover!

So I will update as much as I can! I want to thank you all for the prayers! I got so many emails and texts yesterday regarding Caleb! We love you all!!

Thank you all so much!

God Bless you all!!

God Bless Caleb!!

Saturday, September 12, 2009

Hard to Believe It's Been Two Years

It is so hard to believe that it has been two years since Caleb's Thymus Transplant! Happy Transplant Anniversary Caleb, we are so proud of you! Thank you Dr. Markert for giving our child this opportunity! We will never be able to thank you enough! God Bless you and your team! The picture below is Dr. Markert and Caleb.



Below is the video I made after Caleb's transplant! Wow brings back memories. The wait for Caleb's thymus was the longest wait to that point for any patient that was at Duke. We even had one donor before the one he got that we thought was going to work and then failed the last screen test. Usually, when it passes all the other screen tests it passes the last, but not that time. So when the day FINALLY came that Caleb was gong to get his Thymus..I remember when they were pushing his crib down the hall to take him to the OR for his transplant the nurses walked along side his crib with noise makers and bubbles. It was so surreal. We are so proud of you Caleb you have battled so hard keep fighting little man!



God Bless you all!!

God Bless Caleb!!

Tuesday, September 08, 2009

Surgery and Upcoming Flu Season

Well Caleb's surgery is less than a week away and this will be 'new' for us. This is supposed to be an outpatient surgery, but that is all up to how Caleb feels after surgery and if he lets them extabate (take the breathing tube) him after the surgery. So, I had to contact his doctors today to ask them if they would mind contacting the relative departments (pre-op, post-op, etc) about his isolation precautions due to his immunosuppresion. Unfortunately, this always seems to be a battle and sometimes some doctors and nurses feel they are above these rules and regulations. So I hope if we can get some early notifications to the respective areas it will be less stressful and safer for Caleb.



I am still trying to find out where I can get a H1N1 vaccine for Caleb as it seems like this may be a little hard to get our hands on one for him. Once again, his case is so rare, that we will probably need a lot of doctors letters and phone calls made to explain why he needs this vaccine. I am starting to get nervous about this upcoming flu season as now we have this H1N1 virus out there. I try not to read or listen to any media coverage about the virus. I am very aware that flu in general is very serious and should never be overlooked it is just even more scary when your little one has immune issues. I hate flu season.

So with flu season approaching, it is starting to dawn on me that our trips out, even though there weren't many, will be very limited. This is hard as I already have cabin fever and I am sure Caleb does too! I feel bad for him as I saw how much fun he had interacting with his cousin at the beach and I know we will have to eventually halt all those visits too to protect Caleb. I just know Caleb would benefit so much if he was able to interact with other children. I know in due time...

Well, time for a bolus feed....

Also thanks for the prayers for my mom-she is home now recuperating and our little friend Eva who is now also home recuperating. Please continue to keep them and our little friend Moriah and her family in your prayers!

God Bless you all!!

God Bless Caleb!!