You're SO not going to beleive this . . .

Isaiah anaphylaxed again early this morning - while he was sleeping. He handled it all very well, though - God's hand resting on Him again. Isaiah barely cried when I gave him the Epi, and fussed a little when he was given yet another IV (his third this week, and 5th poke this week . . . apart from the 2 Epis). Isaiah continues to amaze me with how well he is handling all of this - of course we know that it is God's hand. I even felt more peace and didn't shake when I gave him the Epi this morning. It's such an awesome thing to feel God's peace and comfort in the middle of something so frustrating and painful.

Isaiah's reaction was very similar to the last one, with a twist - he would become rigid and throw his head back to catch his breath. Those are just the details, though. I really have to say how amazing God has been throughout all of this. It would be nice to know why Isaiah is going through this, but I don't need to know why as long as God is there with us. Just last night Isaiah was singing a song about people trying to fill the void - the place where Jesus is supposed to fill. He got to the place in the song where the lyrics change to, "Some people try to find it in the arms of Jesus, that's where I found it . . ." It made me cry - my baby boy knows who is carrying him through all of this. He knows his Jesus is right there with him. How awesome is that???

As far as the physical plan of things, Isaiah is now on long-term steroids to control the amount of anaphylaxis episodes he goes through in a 12 month period. We had two options: Prednisone or Xolair. Prednisone has some nasty side effects; Xolair could be worse - especially with Isaiah's sensitivities. There is also no guarantee that insurance would even cover Xolair for someone as young as Isaiah (it is only approved for patients 12 and older). Honestly, I am more at peace with the steroids right now than I initially was . . . God's hand yet again. Of course, it would be absolutely fine with me if God would just touch Isaiah and heal him right now - all in His time, though. Through Isaiah, God has taught the doctors, nurses, and myself about Himself. God is so amazing!

I also want to mention that it is awkward to walk into the local ER and have the staff know who you are . . . when you aren't employed by the hospital and don't visit just because . . . of course, one of the nurses just happens to be one of my student's mothers . . . and another is my boss' husband (I think I saw your husband on Tuesday, Tracy!!). =0) It's also strange to begin to recognize the EMTs - seriously, the guy remembered us. There is humor in all of this, really. It's also an awesome opportunity to introduce all of these wonderful people to Christ, if they don't already know Him.

Well, I will keep you posted on my little man. =0) We should hear from the GI specialist next week with the biopsy results. We should also hear from Isaiah's allergist in St. Pete next week as well (on Monday). Isaiah has an appointment in St. Pete on April 5th, but there is a chance that can change considering the recent events. It should be fun trying to schedule two appointments around each other . . . two appointments that are about a 2-hour or more drive away from each other (St. Pete and Orlando). =0)

Oh yeah . . . my dad comes home tomorrow!!! =0) In case you didn't know, my dad was in MD for the past 3 weeks (okay so 2 weeks in MD and 1 in WV). I know all of you in MD have enjoyed my dad being there, but we need him back here!!! =0) (We miss you, Ye-Ye!!!) Isaiah heard that my dad was coming home tomorrow and I guess misinterpreted that for today . . . he ran to the back porch and began yelling, "Chiiiiiii-iiiiiiig! Chiiiiiiii-iiiiiiiig! Where are you?" =0) He was disappointed to hear that he won't be here until tomorrow evening. =0)

More Pictures and Flashback Friday

No, my computer still is unfixed. =0( At least I do know that it is the operating system, I just need to make sure all of my files are backed up so that I do not lose anything (I have photos that are not on another disk). I know, always make sure the files are backed up, I just didn't save anything to a disk the past 2 months. Anyway, that will cost about $100 just to do that . . . so, I am waiting to have the funds available. =0)

Anyway, here is what I do have . . .

Isaiah's most recent ER visit (taken from my cell phone, Wednesday):

Still mostly unresponsive . . .

After he woke up during x-rays (they were making sure there was no internal bleeding from the procedures) . . . still very pale, but feeling much better (he was playing with some toys the ER nurse gave him while he was sleeping). =0)

Isaiah's ER visit last year around this time.

My little goober and his "Robot" - he was unhooked by this point, but he still wheeled it around with him. =0)

Sorry, these are the most recent pics I have right now, and he looked so peaceful in the first one - I'm glad he was able to rest, as unsettling as it was for me to watch. Hasn't he grown so much over the past year? It's amazing!!! =0)

I will have a few more pictures to post later of Isaiah and his cool outfit. =0)

The Pictures I Promised

Easter Egg Hunt =0)

Arnold Palmer Children's Hospital - this is where Isaiah went to for the procedures and to see the pediatric gastrointernologist (GI).

Before the procedure (and before the "robot" . . . IV). He's displaying his, "I'm not so sure about this, Mom, but since they gave me Diego stickers . . . " smile. =0)

Listening to the anesthesiologist - she thought Isaiah was adorable (of course). =0) This was at the beginning of the flushing episodes and the disco-light spots (they would appear, disappear, and show up in different areas - so weird).

Our view from the surgery waiting room - this is Winnie Palmer's Hospital for Women. Isn't it cool??? By the way, we were having severe storms at the same time Isaiah was going through his procedures. There were tornados just south of where we live.

Still recovering from anesthesia . . . I don't think Isaiah has ever slept this good. =0)

He's awake and smiling! =0)

Yup, humor in tact! =0)

I just love this face! =0)

Our post-op visit of the lobby where the trains were. AP also has a "Disney" section, where they have a statue of Dumbo, the Three Little Pigs, a castle, huge trees (they're fake), and a pirate ship (outside). I'm sure there was more, but Isaiah needed to take it easy. We'll visit that portion of the hospital when we go back for Isaiah's check up . . . I'll take pictures. =0)

Update on Isaiah - Anaphylaxis

I forgot to mention last night that the GI specialist was able to confirm that Isaiah does not have eosinophilic esophagitis. That's good, but still doesn't explain a lot of Isaiah's symptoms. The doctor took several biopsies from both procedures, which should be back in about a week (we have an appointment set up to discuss the results).

Isaiah is doing well this morning - he's still a little pale and tired, but mostly back to normal. Thanks so much for your prayers. Things could have been much worse, but God has protected Isaiah from a much worse reaction and has brought him through a pretty bad reaction. God has blessed this little man, and continues to show us how His joy, peace, and faithfulness persists in Isaiah - what an amazing God we serve!!! =0)

Blessings!

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Isaiah's procedures went well yesterday - really well. No anaphylaxis in the OR - further explanation of this will follow. He flushed in the OR prep room, had spots that would randomly show up and then go away, but he did sooooo good. I am so thankful that he did not anaphylax yesterday.

During the prep for the procedures, there were a few times where I was wondering if we were going to get through all of this without at least a temper tantrum. Isaiah never ceases to amaze me - he didn't cry, didn't ask or beg for food, and just did a wonderful job taking all the laxitives.

I am also so proud of the little guy! He didn't flinch when they gave him the IV - not one bit. He even watched them put it in!!! He even did great when they took him back to the OR - didn't cry or anything.

Even in recovery, Isaiah did so well. It took longer than expected (the recovery portion), but he was also given anesthesia that is not typical for the procedures he had. He even showed us his feisty side, pulling out the breathing tube! =0) He really wanted that pacifier!!! =0)

We stayed in Orlando last night - just in case Isaiah had a delayed reaction. Isaiah was not admitted for an overnight stay (hospitals and the lack of food safe for Isaiah makes hospital stays difficult), so we had to stay in a hotel nearby (they would have admitted him if we hadn't stayed close by). He did so well last night - eating and drinking without any difficulty. He even did well this morning and afternoon. He was back to his spunky self. =0)

However, this evening, Isaiah had an anaphylaxis episode. We thought he was fine - completely out of danger, and he anaphylaxed. Even after the Epi, Isaiah was extremely lethargic. In fact, they thought about admitting him tonight (or this morning), but again . . . the whole lack of food thing. I think I am going to put a suggestion in the hospitals box about bringing in food safe for people like Isaiah. Anyway, Isaiah was given some fluids, more steroids, more benadryl, and something to help with nausea. Right now, he's okay. He's really pale and has the random spots that come and go (and he flushes wherever you touch him right now), but he's doing much better.

The ER doctor said that his reaction was more than likely because of something he received yesterday - either the versed or the anesthesia. Once the prednisone wore off from yesterday, Isaiah's body responded with anaphylaxis. So, now we have to be vigilant and watch him to see if the same thing will happen when the prednisone wears off from tonight . . . we're going to see the ped and the allergist tomorrow, hopefully we won't have any more issues.

Anyway, I just wanted to let you know what was going on. My brain is so tired from this past week. Easter was a blast! Monday was tiring - laxatives every 20 to 30 minutes can wear a person out! =0} Tuesday was stressful, and today, well, today was just trying. I am so thankful we caught the reaction right at the very beginning - before it got to the point where Isaiah needed more than one Epi. I am also thankful God brought Isaiah through the procedures yesterday and through the episode today. God has really carried us through this - and has shown me how brave and beautiful my little boy really is! =0)

Thank you for your prayers - we felt them. Isaiah and I had so much peace yesterday throughout the procedures. We even had a Christian anesthesiologist who was praying as well (by the way, Arnold Palmer is a wonderful children's hospital)!!!

I do have pictures to post, but I will post them later when my brain wakes up a bit more. =0)

Quick Update

The GI office just called to tell us that they had a cancellation in the OR - Isaiah will be going in for the procedures at 10:30 instead of 12. We will be at the hospital at 8:30 tomorrow morning. Isaiah is doing well right now with the no food thing - still no poop, but I'm sure we'll get there. =0(

I also wanted to let you know that cell phones in our area are not working (I think it's affecting central Florida), so if I am supposed to call you, it may not happen until I can call from a regular phone. I will make sure you are contacted, even if I have someone else call you. =0)

Thanks so much for your prayers!

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Well, my computer crashed. I am typing on a borrowed computer for now. Windows Vista - ugh!

Anyway, we got a call from the doctor's office yesterday to tell us that they were changing the time for Isaiah's procedures on Tuesday. They said that since they were expecting complications (aka. anaphylaxis), that they moved Isaiah from the GI Suite to the OR - he is now inpatient for 2 very common procedures (an endoscopy and sigmoidoscopy). That was a scary phone call. Because they had to book the OR, Isaiah's procedures will be done at 12 instead of 8:30 - not so good for a hungry boy, but at least they will be more prepared. It just makes you come back to reality that something could go wrong, the doctors are expecting something to go wrong, and that this disease Isaiah has can be quite serious. Thankfully, we serve a God who can do the impossible - a God who can heal Isaiah and carry him through this.

As far as I know, Isaiah will still receive gas and will still receive IV prednisone, benadryl, and zantac before the procedure, and he will still be intubated. This is all because of his allergy to soy (propofol, the usual sedative, contains soy) and because of his past history with anaphylaxis. I have not heard from the anesthesiologist, so I am still hoping he decides to stick with the gas and not change to the propofol (which is not good for Isaiah's known allergies and it is also known as a trigger for masto reactions . . . aka, anaphylaxis, at least for Isaiah).

We have started the preparation for the sigmoidoscopy - not too bad yet, but won't be too pleasant on Monday (the worst part of the prep). I don't think Isaiah will be a happy camper on Monday. =0( At least we'll be near the potty!!! =0) It looks like Sunday (tomorrow) will be the last day Isaiah can pig out. I have made chocolates for him and we'll have a turkey and some other yummy stuff so that Isaiah can have a yummy day of eating before Monday's fast - yup, no food. He can only have clear liquids, jell-o, and popsicles . . . except for the ones that are dark-colored or red. =0) So, we'll be making popsicles tomorrow and tons of apple juice and white grape juice. =0) He'll like the popsicle part - he loves his "ice cream!" He can also have chicken broth, but he's not too keen on the whole soup thing.

He is having a rough time today - he is very quiet and calm. Almost like I sedated him! =0) He is awake and alert, he just doesn't seem to want to jump around much. Now that I just wrote that, Isaiah decided to dance. =0) Little stinker! =0)

Please, keep Isaiah in your prayers Monday and Tuesday. As I mentioned, his procedures are at noon - we will be at the hospital by 10. I will try to write an update as soon as I can (the place we'll be staying has Internet access and public computers). Thanks for your prayers!!!


(Oh, yeah . . . I forgot to mention that this will be my 100th post!!!) =0) Who knew I had so much to say??? =0)

One more thing . . . Happy Easter!!! =0)

Flashback Friday

Isn't it amazing how one year can change you so much? =0) My baby is growing up sooo fast! =0)

Please Pray for Gavin

Just a quick update on Gavin. Carla posted an update on Gavin earlier today:

Friday, April 3, 2009

Update by Mom
Hi everyone,Gavin is doing okay. They started an IV late last night and it has been running fluids into him non stop. They took more blood and his red blood counts, hemglobin, hematocrit, and MCV are all really low. The endoscopy is at 3 pm today and we will decide the next steps after that.He is doing really well considering. He is being so sweet to all the nurses and doctors and cooperating with all the numerous pokes he has had so far. His sweet and content attitude makes this less difficult to deal with. The nurses are really awesome and we are in a really nice room all by ourselves--we are tremendously blessed, even IN this.Thanks for the continued prayers....me or Angela will keep you all posted.xoxo

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If you look on the right of the screen, I have several buttons with pictures of various children . . . one of them is Gavin. I met Carla through my blog and have gotten to know her through e-mail and through her blog. Gavin has Systemic Mastocytosis (as does Carla and Chelsey) along with Antral G-cell Hyperplasia (a stomach disorder). Antral G-Cell Hyperplasia is very serious, in that it causes an excess of acid in the stomach - so much so that Gavin was receiving more than an adult's dose of antiacids and meds to decrease the production of acid.



Last night, Carla left a message on Facebook that they had to take Gavin to the hospital last night. He had labs done a little bit ago, and his blood work shows that Gavin is bleeding internally. His doctor called Carla to tell them to go to the hospital immediately and to be prepared to stay for a while. They started an IV last night and will do an emergency endoscopy this morning to see what's going on. It is possible that Gavin may need an emergency gastrecotmy and vagotomy (removal of a portion of his stomach and a severing/removal of the nerve that tells the stomach to produce acid).



Please keep Gavin, Carla (Gavin's mom), Tim (Gavin's dad), and Chelsey (Gavin's sister) in your prayers.



Here is the latest from Carla's blog:

Gavin admitted to Miller Children's hospital
Hi all,
I am posting on behalf of Carla to let you know that Gavin has been admitted to Miller Children's hospital. Gavin will most likely be having an IV placed tonight. This is something that does trigger his mastocytosis to react. He will be having his endoscopy tomorrow at 3 pm. this means that he will not be about to eat at all tomorrow. Please pray for Gavin and for wisdom for the doctors and nurses. Gavin is happy this evening please pray for this to continue.
Thank you
Angela