Angel is doing really well. It is soo nice to report that Angel has had an excellent week! His pain has resolved and he is soo much more playful. Everyday he has made progress, wither it be his toleration of the formula increases or daily dressing changes without complaint. This week is like no other week since transplant. Angel is also starting to have more clarity in thought and more focus in activities. His speech is still a little rocky at times but his discussions are very thoughtful and witty.
The goal this week is to get Angel back to baseline with formula feeds. He will be discharged at the same formula rate and TPN volume as we were on before we were readmitted. Though this regiment will be steadily changing as the goal is for no TPN in 2-3 weeks. Angel will be requiring a lot of meds and IV fluid hydration daily but TPN should be out of the picture soon. This is such a strange thought as Angel's entire life has been on TPN. We are excited for that day to come!
Also Angel still has two abdominal wounds that require packing daily. One is mid-abdomen about 6 inch x 3 inch & about 1/2 inch deep and the other is above his right hip 3 inch x 1 inch & about 1/2 inch deep. These wounds take a lot of time to heal. Initially the doctors said in 8-12 weeks and they would be closed but it looks as though it will be another 8-12 weeks before they are completely healed.
The big goal for this week is to have Angel discharged by Friday. Though we are not able to go home, staying in this area is better than being in the hospital. As a family we can plan activities and just spend much needed time together.
This week Haven turned 10 weeks old. Two and a half months since her birth... how time flew by... Wow it is soo incredible!
Well all good news as it pertains to Angel. Thank you all for your thoughts and prayers. The Lord continues to work in and around our lives daily and we are soo blessed!
Wednesday, October 22, 2008
Friday, October 17, 2008
Progress...
Each day Angel is making progress.... This admission has posed some very difficult times mostly surrounding the pain and suffering of procedures and surgery. But as time goes on things have improved and Angel is healing. Our little boy is starting to show signs of being himself agian. Sarah came by today and pointed out that Angel looks better now than he did when we brought him to the apartment almost 3 weeks ago.
We still have some post-surgical issues to work through and a very ambitious plan to be discharged at the end of next week. But over all these last few days Angel has been making slow progress but none the less it's progress.
Angel made it to the playroom the last two days and Sarah was able to take some pictures. It is soo wonderful to see him playing again! It's amazing to me that he is soo resilient and just able to put things aside and play.
Well we hope that this progress continues and in 7 short days we will be heading to the life of being together again.
By the way today is 87 days since transplant.... Boy what an incredible ride it's been!
We still have some post-surgical issues to work through and a very ambitious plan to be discharged at the end of next week. But over all these last few days Angel has been making slow progress but none the less it's progress.
Angel made it to the playroom the last two days and Sarah was able to take some pictures. It is soo wonderful to see him playing again! It's amazing to me that he is soo resilient and just able to put things aside and play.
Well we hope that this progress continues and in 7 short days we will be heading to the life of being together again.
By the way today is 87 days since transplant.... Boy what an incredible ride it's been!
Saturday, October 11, 2008
Slowly recovering...
Angel is slowly recovering from this busy week. He has had quite a bit of pain these last few days since surgery. He also has struggled with anxiety as his whole world has been turned up side down for sometime now. Getting discharged 2 weeks ago was wonderful and much needed but Angel now is having a harder time adjusting to the hospital routine. He is requiring more with boundaries and structure than he had before. We have made a point of setting a daily schedule and routine. He bucks at the idea of specific task like bathing, dressing changes and walks but has realized that once these things are done he is able to enjoy the rest of the day. He is a brave little boy having to go through this major transplant and follow up operations. He has done soo well over-all and we are very proud of him. The plan will be for him to be admitted until he is back to tolerating his feeds to at least where he was before surgery if not a little better. Our hope is to be home before Thanksgiving and especially before Angel's birthday in December.
We will continue to encourage progress with Angel post operatively and look forward to the day that he will be running and playing outside again.
The rest of the family is doing well, we are soo grateful for our parents who have been there supporting us and working directly with us on almost every one of the 81 days we have been out here. Such a beautiful thing to have such a wonderful family. To be able to rely on them has given us the ability to stay strong and on course for this amazing mission of getting Angel his transplant and a renewed hope for his future.
Thanks again everyone for reading and supporting us during this time. It is a pleasure to share with all of you our daily lives and to know that you are praying for our family and especially Angel is beyond words...THANK YOU!
We will continue to encourage progress with Angel post operatively and look forward to the day that he will be running and playing outside again.
The rest of the family is doing well, we are soo grateful for our parents who have been there supporting us and working directly with us on almost every one of the 81 days we have been out here. Such a beautiful thing to have such a wonderful family. To be able to rely on them has given us the ability to stay strong and on course for this amazing mission of getting Angel his transplant and a renewed hope for his future.
Thanks again everyone for reading and supporting us during this time. It is a pleasure to share with all of you our daily lives and to know that you are praying for our family and especially Angel is beyond words...THANK YOU!
Wednesday, October 8, 2008
From procedures to surgery...
Angel was admitted as planned on Sunday night to be available for procedures and a possible surgery this week. The plan was to give him a blood transfusion on Sunday as his blood counts were low. Schedule an upper and lower endoscopy under general anesthesia on Monday, CT scan of his abdomen and then a barium enema on Tuesday and surgery on Wednesday to correct the prolapsed bowel coming out from his stoma.
As planned all things were done. The blood transfusion on Sunday went without problems. Monday the scopes were done to rule out rejection, infecion and to confirm that his transplant would be accessible in the future if they closed his stoma. The results of the scope biopsies were a bit concerning as 1 out of 12 specimens had signs of possible rejection. This though was not severe enough to postpone surgery for Wednesday. Tuesday was the CT and barium enema. Fortunately we had a nurse that was willing to go down with Angel to infuse the contrast in his central line avoiding the need to get poked for a IV placement. This sounds like not a big deal but in fact there was no other floor nurse that has ever done it. I guess it is a little know fact that this is possible. Speaking to the doctors they felt that is would be OK for her to do this and so they wrote for the nurse to administer the contrast. This study went well and then we went to have the barium enema. Unfortunately this study was not as easy to accomplish. Angel for good reason refused to comply and after negotiating, begging, and bribing we had to hold him while the test was administered. Accomplishing all these test in such a short amount of time was quite a lot for our little guy. He did receive a pretty good consolation prize including toys and video games for his good effort. After getting all the testing completed and reviewed, the surgery was scheduled as planned.
This morning Angel had his stoma taken down, or basically had all of his intestines reconnected. During this surgery the doctors found that his bowel had an intussusception of his intestines.
(Intussusception occurs when one portion of the bowel slides into the next, much like the pieces of a telescope. When this occurs, it creates an obstruction in the bowel, with the walls of the intestines pressing against one another. This, in turn, leads to swelling, inflammation, and decreased blood flow to the intestines involved.) They believe this happened a long time ago - back from his first illus where his intestines stopped working and they stopped all feeds and he had the vomiting and back pain etc. Not sure why the scopes, enemas, CT's etc did not show this. So it is highly probable that the pain, vomiting, lethargy, lack of tolerating feeds, and even the prolapse of bowel were all due to this. They had to resect (remove) another part of his intestines to fix this.
Angel is in a moderate amount of pain but doing quite well overall. He was more upset about waking up from surgery with an NG tube in his nose and later found that he had a foley catheter in his "pee pee".
Angel will require another week or two in the hospital and we will reevaluated the possible rejection before we get discharged again. The rest of the family is doing OK. Sarah and the kids continue to make the best of this difficult week. Haven turns 8 weeks old today. She really puts into perspective the amount of time we have been working on things post transplant. She is growing soo big it is incredible see her interactive and smiling. Mr. Hudson is also doing well but really misses his big brother.
Thank you all for your prayers. If it is true that the intussusception was the root of the problems we may have our prayers answered of moving only UP from here. Except the rejection I guess... as we still will need to deal with that later.
More on things later this week... Thank you all again for keeping track of us. We appreciate all the prayers and support. Till next time may God bless all of you!
As planned all things were done. The blood transfusion on Sunday went without problems. Monday the scopes were done to rule out rejection, infecion and to confirm that his transplant would be accessible in the future if they closed his stoma. The results of the scope biopsies were a bit concerning as 1 out of 12 specimens had signs of possible rejection. This though was not severe enough to postpone surgery for Wednesday. Tuesday was the CT and barium enema. Fortunately we had a nurse that was willing to go down with Angel to infuse the contrast in his central line avoiding the need to get poked for a IV placement. This sounds like not a big deal but in fact there was no other floor nurse that has ever done it. I guess it is a little know fact that this is possible. Speaking to the doctors they felt that is would be OK for her to do this and so they wrote for the nurse to administer the contrast. This study went well and then we went to have the barium enema. Unfortunately this study was not as easy to accomplish. Angel for good reason refused to comply and after negotiating, begging, and bribing we had to hold him while the test was administered. Accomplishing all these test in such a short amount of time was quite a lot for our little guy. He did receive a pretty good consolation prize including toys and video games for his good effort. After getting all the testing completed and reviewed, the surgery was scheduled as planned.
This morning Angel had his stoma taken down, or basically had all of his intestines reconnected. During this surgery the doctors found that his bowel had an intussusception of his intestines.
(Intussusception occurs when one portion of the bowel slides into the next, much like the pieces of a telescope. When this occurs, it creates an obstruction in the bowel, with the walls of the intestines pressing against one another. This, in turn, leads to swelling, inflammation, and decreased blood flow to the intestines involved.) They believe this happened a long time ago - back from his first illus where his intestines stopped working and they stopped all feeds and he had the vomiting and back pain etc. Not sure why the scopes, enemas, CT's etc did not show this. So it is highly probable that the pain, vomiting, lethargy, lack of tolerating feeds, and even the prolapse of bowel were all due to this. They had to resect (remove) another part of his intestines to fix this.
Angel is in a moderate amount of pain but doing quite well overall. He was more upset about waking up from surgery with an NG tube in his nose and later found that he had a foley catheter in his "pee pee".
Angel will require another week or two in the hospital and we will reevaluated the possible rejection before we get discharged again. The rest of the family is doing OK. Sarah and the kids continue to make the best of this difficult week. Haven turns 8 weeks old today. She really puts into perspective the amount of time we have been working on things post transplant. She is growing soo big it is incredible see her interactive and smiling. Mr. Hudson is also doing well but really misses his big brother.
Thank you all for your prayers. If it is true that the intussusception was the root of the problems we may have our prayers answered of moving only UP from here. Except the rejection I guess... as we still will need to deal with that later.
More on things later this week... Thank you all again for keeping track of us. We appreciate all the prayers and support. Till next time may God bless all of you!
Saturday, October 4, 2008
Angel to be readmitted.
Angel will be admitted back to the hospital tomorrow (Sunday) afternoon/evening. They are going to do a scope through his ostomy as well as an upper and lower GI. He will also have a Barium Enema done and those test results will determine how soon they are going to do the surgery to take down his ileostomy. There is a possibility they will do it as soon as the end of next week but also a possibility he will have to be admitted later on for that. His ostomy continues to worsen and prolapse (the intestine is actually coming out of the stoma or opening even more). It is bleeding and we believe could be the cause of the increasing nausea and vomiting he is having. He has ups and downs throughout the day in regards to how he feels. As I type he is playing with his Playmobil set at the kitchen table.
We are trying to enjoy our last day as a family again for a while... It was wonderful to be home together for a week but almost makes it more difficult to have him go back in because we have experienced the joy of being together and the possibility of going home soon. We have been so content living here and beyond grateful for our provisions and current situation. But now we realize that we are tired and really missing home and the people there who mean so much to us. The journey is long. We will make it together.
We are trying to enjoy our last day as a family again for a while... It was wonderful to be home together for a week but almost makes it more difficult to have him go back in because we have experienced the joy of being together and the possibility of going home soon. We have been so content living here and beyond grateful for our provisions and current situation. But now we realize that we are tired and really missing home and the people there who mean so much to us. The journey is long. We will make it together.
Please pray for Angel to feel better... for the nausea, vomiting, and retching to subside. Pray that they will be successful in taking down his ostomy and "reconnecting" him. Pray that our family will be bolstered in this... "round 2" of hospitalization and being separated.
Wednesday, October 1, 2008
Wow it's busy....
It has been wonderful to have the family all under one roof. What a joy it is to work together as a team side by side not separated by a hospital admission. But WOW... it is soo busy. Angel has had some close calls that got us close to being readmitted to the hospital. Just after 6 hours home we were calling back to the doctors to report issues. We have been in close contact with medical staff daily. Everyday we go into the hospital for labs to be drawn and to be seen by the doctors. Angel has had problems with his ostomy since last week. This has now brought us to a point that he will require a "take-down" surgery to remove the ostomy and reconnect his bowel. This will be months sooner than previously planned. The repercussions are unknown as this is uncharted territory for a postop bowel transplant and usually reserved for a patient 6 months after transplant that is doing stellar with tolerating feeds. Angel has struggled with feeds and with staying hydrated but will require this surgery due to the prolapsed bowel from the stoma. We have now scheduled Angel for a CT, barium enema and upper and lower scopes of the intestine next week. If all looks good we will do the take down at the end of Oct. This then means that we will need to stay around the hospital for another 6 weeks if not longer. Our hope is that we are able to come home before Thanksgiving.
Angel is continuing to hang in there I ask that you pray for him as we are still in the trenches of this major battle of being at home post discharge. He also will be required to have multiple procedures and another surgery in the next few weeks. Which will also mean that he will need to be in the hospital for another admission. We as a family could also use your prayers and support. These busy days since discharge followed by a 70 day hospital admission have started to take there toll. We are hanging in there but it has been exhausting. One huge continued praise is the support of our parents. My Mom has stayed with us and has supported us during this transition. What an amazing blessing to have a supportive family during times like this.
Well it's time to get some sleep as we have to be up early to go to the hospital for labs. I will update more later. But as a general rule if I am not keeping up with the blog it's because I am barley keeping up with everything else. =)
Angel is continuing to hang in there I ask that you pray for him as we are still in the trenches of this major battle of being at home post discharge. He also will be required to have multiple procedures and another surgery in the next few weeks. Which will also mean that he will need to be in the hospital for another admission. We as a family could also use your prayers and support. These busy days since discharge followed by a 70 day hospital admission have started to take there toll. We are hanging in there but it has been exhausting. One huge continued praise is the support of our parents. My Mom has stayed with us and has supported us during this transition. What an amazing blessing to have a supportive family during times like this.
Well it's time to get some sleep as we have to be up early to go to the hospital for labs. I will update more later. But as a general rule if I am not keeping up with the blog it's because I am barley keeping up with everything else. =)
Saturday, September 27, 2008
What a rollercoaster...
Angel yelling "Look out woooooooorld!!!"
At the point of the last post Angel had started the week off a little rocky but by mid-week it looked as though home was near again. But on Wednesday it was clear that going home was postponed after some bleeding from his ostomy. After further review and 24hrs of monitoring going home looked like a possibility again, as the bleeding was only a one time thing. So another plan was made late Thursday that if another 24hrs went by without problem we would leave on Friday.
Friday morning came and everything looked great. But first thing in the morning Angel wanted to go "poop", which was very unusual. Turned out that he had more dark blood.... now from below. So at this point all bets were off and it appeared that the GI team would have to reevaluate and keep us in the hospital for observation a few more days.
But as the transplant rollercoaster goes the GI head doctor felt that it was to be expected with the issues we had earlier in the week and discharge on Friday would be fine. This news came at about 1230 as we sat back all relaxed figuring on being in the hospital over the weekend. But to our surprise we were being discharged and allowed to leave after one last infusion...Discharge was planned for 5pm.
After collecting all of Angel's things that accumulated over 66 days and getting Angel ready we packed up and actually left... Walking out the doors of the unit was very surreal. The head transplant surgeon that did Angel's surgery was coming out of the ICU and happened to meet up with us at the elevator. We shook hands, said a big THANK YOU and continued on our way. Angel came into the hospital with this great man welcoming us in and he was there on our way out...it was soo cool.
Angel also wanted to wear his super hero costume and was very into character as we left. When Angel walked out of the doors of the hospital, he stood at the exit looking outside and said with a loud voice "Look out Wooorld!" it was great...
Getting into the car Angel marveled at his car seat and even said woohoo when we pulled away, as if he was on a ride. But as Daddy picked up the speed to a raging 35-40mph =) Angel was nervous and asked to slow down...it had been awhile and being in the car was needing a little getting use to.
Once we got home it was pretty crazy unloading, showing Angel around, Hudson and Angel establishing their new territory, TPN, IV meds, JT meds, ostomy outputs...dinner & then bedtime. As we were getting ready for bed we noticed that Angel's stoma was discolored, as if the skin in a small section was not getting good blood supply....
So here we are less than 6 hrs at home calling back to the hospital to report a problem. I took a picture of the stoma with my phone and emailed the doctor on call. After talking to her at about 11pm we decided to observe it overnight & if it got worse to come into the hospital and be examined...
So though we were home we were on an extremely short leash...I stayed up after midnight watching for any changes. But it appeared to be the same and I went off to bed. In the morning the abnormal area appeared to be getting better overall but a small thin line was darker... After emailing with the doctor we are still home keeping a close eye on it.
What an emotion roller coaster. Excited to be home but very guarded. Angel and Hudson played really well today. Video games, action figures, house, outside play, etc... It was sweet. They are now both down for a nap and Sarah and I are resting. It is wonderful to be under the same roof and working together as a team. Sarah is an amazing partner she is very structured and organized and yet flexible and willing to jump in and help me with Angel's new cares. Little Haven is a bit more content these days and that helps with the routine as well as Sarah getting enough sleep.
Well our family is together and for a moment it is peaceful and very normal...we will enjoy it and savor it as long as it is granted to us.
Till the next time... Thank you all again for you love, prayers and support!!!
Friday morning came and everything looked great. But first thing in the morning Angel wanted to go "poop", which was very unusual. Turned out that he had more dark blood.... now from below. So at this point all bets were off and it appeared that the GI team would have to reevaluate and keep us in the hospital for observation a few more days.
But as the transplant rollercoaster goes the GI head doctor felt that it was to be expected with the issues we had earlier in the week and discharge on Friday would be fine. This news came at about 1230 as we sat back all relaxed figuring on being in the hospital over the weekend. But to our surprise we were being discharged and allowed to leave after one last infusion...Discharge was planned for 5pm.
After collecting all of Angel's things that accumulated over 66 days and getting Angel ready we packed up and actually left... Walking out the doors of the unit was very surreal. The head transplant surgeon that did Angel's surgery was coming out of the ICU and happened to meet up with us at the elevator. We shook hands, said a big THANK YOU and continued on our way. Angel came into the hospital with this great man welcoming us in and he was there on our way out...it was soo cool.
Angel also wanted to wear his super hero costume and was very into character as we left. When Angel walked out of the doors of the hospital, he stood at the exit looking outside and said with a loud voice "Look out Wooorld!" it was great...
Getting into the car Angel marveled at his car seat and even said woohoo when we pulled away, as if he was on a ride. But as Daddy picked up the speed to a raging 35-40mph =) Angel was nervous and asked to slow down...it had been awhile and being in the car was needing a little getting use to.
Once we got home it was pretty crazy unloading, showing Angel around, Hudson and Angel establishing their new territory, TPN, IV meds, JT meds, ostomy outputs...dinner & then bedtime. As we were getting ready for bed we noticed that Angel's stoma was discolored, as if the skin in a small section was not getting good blood supply....
So here we are less than 6 hrs at home calling back to the hospital to report a problem. I took a picture of the stoma with my phone and emailed the doctor on call. After talking to her at about 11pm we decided to observe it overnight & if it got worse to come into the hospital and be examined...
So though we were home we were on an extremely short leash...I stayed up after midnight watching for any changes. But it appeared to be the same and I went off to bed. In the morning the abnormal area appeared to be getting better overall but a small thin line was darker... After emailing with the doctor we are still home keeping a close eye on it.
What an emotion roller coaster. Excited to be home but very guarded. Angel and Hudson played really well today. Video games, action figures, house, outside play, etc... It was sweet. They are now both down for a nap and Sarah and I are resting. It is wonderful to be under the same roof and working together as a team. Sarah is an amazing partner she is very structured and organized and yet flexible and willing to jump in and help me with Angel's new cares. Little Haven is a bit more content these days and that helps with the routine as well as Sarah getting enough sleep.
Well our family is together and for a moment it is peaceful and very normal...we will enjoy it and savor it as long as it is granted to us.
Till the next time... Thank you all again for you love, prayers and support!!!
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