Isaiah is growing quite quickly into a little man, and has a bigger than life personality! He already knows how to work the crowd, especially the ladies!) He is very funny, likes to make us laugh, likes to torture his older brother. It's never a dull moment around here!
Quick update on his G-tube: We were at CHOP Main 3 times this past week to have his site examined. There is a sore at the surgical site that is starting to tunnel down into where the tube enters the stomach. It is draining, and the doctor had it swabbed for any bacterial infection. It also has granulation tissue growing, which is similar to scar tissue that inhibits healing. Thankfully, the culture came back with a mild bacterial overgrowth that is NOT serious enough for oral antibiotics. We are able to treat the mild infection topically with an antibiotic ointment. Plus, the doctor was able to cauterize the granulation growth. So, now he is hopefully on the mend. We go back to see Dr. Collins on Sept. 1st for another evaluation. She'll determine at that time if she needs to change out the whole tube.
Thank you for continuing to pray, providing meals, sending words of encouragement, and helping out in other ways. We could not have made it through all of this without you!
Friday, August 20, 2010
Friday, August 13, 2010
QUICK UPDATE...
Isaiah is having trouble with his G-tube site. He now has an ulcerated area around the surgical site. This is causing him additional pain. Every time we hook up his feeds (which is 3 times a day) it rubs against the open area. It's really hard to allow the area rest, and to keep it dry and clean when we have to use it daily. We now have to travel down to CHOP on a weekly basis to see his general surgeon, Dr. Collins. This is adding a lot of additional stress to all of us. Please pray that this sore heals and that it won't become worse.
Isaiah is also still having a lot of trouble eating and drinking. He's at the point he doesn't even want to try. Dr. Collins seems to think that after a couple of weeks, he'll want to try eating again. He continues to throw up every night, and we are dealing with constipation and bloating. Chris and I are tired, and I'm sorry this note doesn't contain good news. This is just our reality right now.
We need an extra dose of grace and energy right now from God. We know what God promises in His Word, but we really need to believe it and rely on it. Pray that not only will Isaiah quickly be healed, but that we will make these following verses our own: "Three times I pleaded with the Lord to take this away from me. But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong," 2 Corinthians 12:8-10. Thank you.
Isaiah is also still having a lot of trouble eating and drinking. He's at the point he doesn't even want to try. Dr. Collins seems to think that after a couple of weeks, he'll want to try eating again. He continues to throw up every night, and we are dealing with constipation and bloating. Chris and I are tired, and I'm sorry this note doesn't contain good news. This is just our reality right now.
We need an extra dose of grace and energy right now from God. We know what God promises in His Word, but we really need to believe it and rely on it. Pray that not only will Isaiah quickly be healed, but that we will make these following verses our own: "Three times I pleaded with the Lord to take this away from me. But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong," 2 Corinthians 12:8-10. Thank you.
Sunday, August 8, 2010
HOME SWEET HOME!!!!!!
We made it safely home late Sunday afternoon from CHOP. We are doing really well, just tired. We were supposed to come home Saturday, but Isaiah still had not pooped and we were having trouble with his G-Tube site. It was leaking and no one was sure why. Finally, we determined that the one extension set was cracked and the other one was loose. Once we exchanged out the sets, the G-tube stopped leaking. Then after Isaiah pooped, we were given the green light to go home. He is still not eating by mouth and continues to throw up often. It's incredibly frustrating, but there are worse things. We just have to learn to focus on the positive. We are hoping that after this surgery Isaiah will eventually learn to eat and tolerate food. Please continue to pray for this with us.
Isaiah was a favorite amongst the nurses. Many times we would find him at the nurse's station flirting away, giving the 'Surprise Face', helping out with their charts, or he'd be down in the play room entertaining other patients. He is quite a character and has made many of them laugh. Daily, nurses would come into his room for a hug/smile/kiss/or a surprise face---It's something Isaiah likes to do to make people smile or laugh.
Josiah came home at about 6pm on Sunday night. It's always a wonderful feeling when you've been separated from your child, and they come running into you with lots of hugs and kisses! We are so glad to be back together as a family. Thank you for praying for all of us. Thanks to the Ekstrom and Miller families for watching Josiah this past week, and thanks to those who have been providing meals. You've been an incredible help and have alleviated a lot of stress and extra work.
Isaiah was a favorite amongst the nurses. Many times we would find him at the nurse's station flirting away, giving the 'Surprise Face', helping out with their charts, or he'd be down in the play room entertaining other patients. He is quite a character and has made many of them laugh. Daily, nurses would come into his room for a hug/smile/kiss/or a surprise face---It's something Isaiah likes to do to make people smile or laugh.
Josiah came home at about 6pm on Sunday night. It's always a wonderful feeling when you've been separated from your child, and they come running into you with lots of hugs and kisses! We are so glad to be back together as a family. Thank you for praying for all of us. Thanks to the Ekstrom and Miller families for watching Josiah this past week, and thanks to those who have been providing meals. You've been an incredible help and have alleviated a lot of stress and extra work.
Thursday, August 5, 2010
HEALING NICELY...
God has been faithful and little Isaiah is doing well. Dr. Collins was very pleased with how Isaiah did during the G-tube placement. She was able to place the tube without difficulty. Dr. Collins said she was able to examine the duodenal surgical site (from when he was 6 days old), and it looked great. There was only one adhesion that she had to cut through.
Isaiah had a tough time recovering from anesthesia again, but we were prepared for that. The biggest problem Isaiah encountered was pain management. He was in excruciating pain post-op, and it took about 4 hours until his pain was under control. It was heart-wrenching to see him in agonizing pain and not be able to do anything about it.
Today, Isaiah has been out of bed (in a wagon) and has been playing in the game room. He is still having pain, but it is easily controlled. They started giving him some formula through his G-tube (about 2oz.), and he was able to tolerate it without difficulty. Tonight, they will give a larger amount of formula through a continuous feed into the G-tube. He will probably be discharged on Saturday if all goes well.
We finally made it into the Ronald McDonald House. We are very happy to finally be there. The first night we were at a couple's home near CHOP. Last night we stayed in a hotel, and tonight we were planning to sleep at the hospital. But, on our way to the hospital, we got the call for an opening at the Ronald House---Praise the Lord!!!! God provided for us yet again just as the Bible states, "My God shall supply all your (my) needs according to his riches in glory by Christ Jesus," Philippians 4:19. Thank you again for all your prayers! God is listening!!!
Isaiah had a tough time recovering from anesthesia again, but we were prepared for that. The biggest problem Isaiah encountered was pain management. He was in excruciating pain post-op, and it took about 4 hours until his pain was under control. It was heart-wrenching to see him in agonizing pain and not be able to do anything about it.
Today, Isaiah has been out of bed (in a wagon) and has been playing in the game room. He is still having pain, but it is easily controlled. They started giving him some formula through his G-tube (about 2oz.), and he was able to tolerate it without difficulty. Tonight, they will give a larger amount of formula through a continuous feed into the G-tube. He will probably be discharged on Saturday if all goes well.
We finally made it into the Ronald McDonald House. We are very happy to finally be there. The first night we were at a couple's home near CHOP. Last night we stayed in a hotel, and tonight we were planning to sleep at the hospital. But, on our way to the hospital, we got the call for an opening at the Ronald House---Praise the Lord!!!! God provided for us yet again just as the Bible states, "My God shall supply all your (my) needs according to his riches in glory by Christ Jesus," Philippians 4:19. Thank you again for all your prayers! God is listening!!!
Wednesday, August 4, 2010
SURGERY TODAY, AUGUST 4TH
Isaiah is currently in the OR getting his G-tube placed. We had to be at the hospital at 10am, but he wasn't taken in to surgery until 1pm. It is a 1-2 hour procedure. Please pray for Dr. Joy Collins as she works on him, and for no complications during the surgery. Pray that this new tube in his stomach will help him want to eat. Also, we have not been able to get into the Ronald McDonald House yet. We are still trying and hopeful. Right now, we are staying with a very nice couple that live only 5 minutes from CHOP. They don't have air conditioning, so we are a bit toasty up on the 3rd floor. I guess you could say we are a tad spoiled;)We are just glad we are close for now.
Thank you for all your prayers!
Thank you for all your prayers!
Wednesday, July 28, 2010
FANTASTIC NEWS!!!!!!!!!!
Once again, God answered your prayers as we waited for the endocrinologist to get back to us about Isaiah's issues. According to the Diagnostic specialist we saw, the endocrinologist felt very strongly that Isaiah does NOT have anything wrong with his pituitary, adrenal, or thyroid glands. She reviewed his entire chart, labs, radiology reports, etc. from birth til now. Per this doctor, Isaiah is showing NO signs of these particular glands being affected-----PRAISE THE LORD!!!!!!!!!! He will have his thyroid levels repeated just to make sure they are back up to normal (they were a little low in January due to his sickness). We are still waiting to see if anything needs to be done about his spine.
Another exciting moment for us was when Isaiah walked for the first time this past Monday!!!!! He balanced himself off of the therapist and took 4 unassisted steps to me. Then he took another 6 unassisted steps for the video camera for daddy. We were very excited! Then, at the park, Isaiah decided to climb up the stairs of the jungle gym ALL BY HIMSELF!!! I didn't even know he could do that! He is on a rampage now! Hopefully, you can see some of the video clips we tried to attach!
Surgery is back on for Wednesday, August 4th. Isaiah will have the G-tube placed in his stomach for feeds. It'll be much easier to manage, and hopefully we will have less mishaps from the extended tubing we are currently using--we've found Isaiah at the bottom of his crib with the tubing wrapped around his neck a few times. Fun huh?!?!?
TWO PRAYER REQUESTS:
1. That surgery goes well and that it will actually improve Isaiah's reflux and appetite.
2. That we can get in to the Ronald McDonald House. We won't know till the day of if we can get a room at the house. We need a room from Tuesday til Sat. Please pray with us.
Thank you again for carrying us through a very scary time!!!!
Another exciting moment for us was when Isaiah walked for the first time this past Monday!!!!! He balanced himself off of the therapist and took 4 unassisted steps to me. Then he took another 6 unassisted steps for the video camera for daddy. We were very excited! Then, at the park, Isaiah decided to climb up the stairs of the jungle gym ALL BY HIMSELF!!! I didn't even know he could do that! He is on a rampage now! Hopefully, you can see some of the video clips we tried to attach!
Surgery is back on for Wednesday, August 4th. Isaiah will have the G-tube placed in his stomach for feeds. It'll be much easier to manage, and hopefully we will have less mishaps from the extended tubing we are currently using--we've found Isaiah at the bottom of his crib with the tubing wrapped around his neck a few times. Fun huh?!?!?
TWO PRAYER REQUESTS:
1. That surgery goes well and that it will actually improve Isaiah's reflux and appetite.
2. That we can get in to the Ronald McDonald House. We won't know till the day of if we can get a room at the house. We need a room from Tuesday til Sat. Please pray with us.
Thank you again for carrying us through a very scary time!!!!
Tuesday, July 20, 2010
SURGERY AUGUST 4th----UPSETTING NEWS
Well, we were at CHOP again on July 15th and on the 19th to see more specialists. On Thursday, we left the house at 6:20am and didn't return til 7:15pm, a very loooong day. I am going to try to give you the short version of what is going on.
Isaiah saw Radiology, General Surgery, Pulmonology, Anesthesia, and Diagnostics on the 15th, and Cardiology on the 19th.
1. Radiology: a repeat chest X-ray was done, and his lungs were clear. This is a praise since his last x-ray was abnormal.
2. Surgery: Isaiah is tentatively scheduled for surgery August 4th for a G-tube placement into the stomach for feeds, which would replace the NG tube in his nose. Surgery believes he stills needs the Nissen procedure, but we are desperately trying to avoid that because of all the complications that surround it. He will be hospitalized for 2-3 days post-op, and we will be staying at the Ronald McDonald House again (if possible).
3. Pulmonology: Isaiah has been officially diagnosed with a moderate case of asthma. The doctors put him on 3 new medications and is having him rechecked for cystic fybrosis. The original blood tests for CF were inconclusive for them.
4. Anesthesia: Isaiah is cleared for surgery as long as he remains well and stable. He will have to be closely monitored post-op to try to prevent any apneic/bradycardic events.
5. Diagnostics:This was the most intensive appointment of the day. Dr. Mark was incredibly thorough and found some abnormal lab work that had been missed by other doctors. Apparently, Isaiah's thyroid and vitamin D levels are low. Also, he may have pituitary problems and spinal issues. The abnormalities with the thyroid and pituitary have a direct affect on Isaiah's growth and development. If the docs can not regulate/correct the problems with the thyroid and pituitary, the worst case scenario is that Isaiah will stop growing and developing. This was incredibly difficult to hear. I will find out more this week what the plan of treatment will be for Isaiah. I know he will need more lab work and probably 2 separate MRIs, one of the brain and one of the spine. Dr. Mark wanted to confer with several other specialists---Endocrinology, Genetics, Urology, and Surgery---to determine what would be best plan for Isaiah. Pray for wisdom for them.
6. Cardiology:Isaiah has been having subtle changes on heart monitor that he wears during tube feeds and at bedtime. We went from normal readings, to a low resting heart rate of 50-60 bpm, to now having apneic episodes. Cardiology does not feel Isaiah has anything structurally wrong with his heart, but that part of the central autonomic nervous center of the brain may be causing the changes (i.e.the pituitary). His last EKG was normal. Dr. Boris is curious to see what would happen if all the labs stabilized. Abnormal thyroid and pituitary levels can have a direct affect on the heart as well as other important organs/systems of the body. Isaiah is currently on a 24 hour Holter monitor. I am hoping that whatever episodes Isaiah has been having will be captured by the Holter.
7. Primary Pediatrician: Last, but not least, Isaiah's primary doctor has some concern about the adrenal glands. I called the Diagnostic doctor to let him know. I am hoping that all the doctors can coordinate what tests they need as to not have to put Isaiah through too much.
Well, this is the abbreviated version of the craziness that is going on right now. We need alot of prayer, grace, and wisdom to figure out what's happening in little Isaiah's body. Please pray that everything can be stabilized, and that nothing serious will happen to him. Thank you.
Isaiah saw Radiology, General Surgery, Pulmonology, Anesthesia, and Diagnostics on the 15th, and Cardiology on the 19th.
1. Radiology: a repeat chest X-ray was done, and his lungs were clear. This is a praise since his last x-ray was abnormal.
2. Surgery: Isaiah is tentatively scheduled for surgery August 4th for a G-tube placement into the stomach for feeds, which would replace the NG tube in his nose. Surgery believes he stills needs the Nissen procedure, but we are desperately trying to avoid that because of all the complications that surround it. He will be hospitalized for 2-3 days post-op, and we will be staying at the Ronald McDonald House again (if possible).
3. Pulmonology: Isaiah has been officially diagnosed with a moderate case of asthma. The doctors put him on 3 new medications and is having him rechecked for cystic fybrosis. The original blood tests for CF were inconclusive for them.
4. Anesthesia: Isaiah is cleared for surgery as long as he remains well and stable. He will have to be closely monitored post-op to try to prevent any apneic/bradycardic events.
5. Diagnostics:This was the most intensive appointment of the day. Dr. Mark was incredibly thorough and found some abnormal lab work that had been missed by other doctors. Apparently, Isaiah's thyroid and vitamin D levels are low. Also, he may have pituitary problems and spinal issues. The abnormalities with the thyroid and pituitary have a direct affect on Isaiah's growth and development. If the docs can not regulate/correct the problems with the thyroid and pituitary, the worst case scenario is that Isaiah will stop growing and developing. This was incredibly difficult to hear. I will find out more this week what the plan of treatment will be for Isaiah. I know he will need more lab work and probably 2 separate MRIs, one of the brain and one of the spine. Dr. Mark wanted to confer with several other specialists---Endocrinology, Genetics, Urology, and Surgery---to determine what would be best plan for Isaiah. Pray for wisdom for them.
6. Cardiology:Isaiah has been having subtle changes on heart monitor that he wears during tube feeds and at bedtime. We went from normal readings, to a low resting heart rate of 50-60 bpm, to now having apneic episodes. Cardiology does not feel Isaiah has anything structurally wrong with his heart, but that part of the central autonomic nervous center of the brain may be causing the changes (i.e.the pituitary). His last EKG was normal. Dr. Boris is curious to see what would happen if all the labs stabilized. Abnormal thyroid and pituitary levels can have a direct affect on the heart as well as other important organs/systems of the body. Isaiah is currently on a 24 hour Holter monitor. I am hoping that whatever episodes Isaiah has been having will be captured by the Holter.
7. Primary Pediatrician: Last, but not least, Isaiah's primary doctor has some concern about the adrenal glands. I called the Diagnostic doctor to let him know. I am hoping that all the doctors can coordinate what tests they need as to not have to put Isaiah through too much.
Well, this is the abbreviated version of the craziness that is going on right now. We need alot of prayer, grace, and wisdom to figure out what's happening in little Isaiah's body. Please pray that everything can be stabilized, and that nothing serious will happen to him. Thank you.
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