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Life story
January 23, 2008
 

Gabriel Omar DeJesus was born on Wednesday January 23, 2008 at 12:39am, prematurely at 30 weeks by emergency C-Section at Winnie Palmer Hospital in Orlando, Florida.  He weighed 3 pounds 5 Oz and was 14 and a half inches in length.  He was his mommy & daddy's little monkey, because he was always so active in his mommy's belly and was born with so much hair (lanugo due to the prematurity).  He was know as little Baby G.O.D. Many people said many prayers for little Baby G.O.D. to come home healthy.  On February 17th, 2008 Our little man came home, unfortunately not for long...

February 20, 2008
 
Hi everyone,
 
Sorry it has taken me so long to notify everyone.  As some of you may have heard I delivered Baby Gabriel Omar DeJesus 10 weeks early on January 23, 2008.  He was born at 3lbs. 5oz. he stayed in the NICU at Winnie Palmer almost 4 weeks and was released this past Sunday.  Yay, my baby is home.  I have attached some photos of him from last week in the NICU.  I have not downloaded my digital camera yet...been a little busy...lol.  I thank you all for your prayers for Gabriel, he is doing absolutely great.  As of yesterday he went to the pediatrician and now weighs in at 4lbs. 3oz.  I will keep updating as I can.  Thank you again!!!
March 22, 2008
 
Hey everyone,

So this week was another trying week. Monday he seemed to be doing great and the doctor's plans of him getting better seemed to change when Gabriel had a master plan of his own. Monday he had a lot removed and by Tuesday it all came back and even more. Earlier this week, unfortunately they had problems ventilating him and it turned out they think he has a leak on his Thoracic Duct and unfortunately not absorbing the fat in his food. They have suspended his food intake and is on an IV drip that has nutrients for him. Because of this leak, he swelled very much and now has a chest tube on both his right and left sides. He is draining about 150cc (30cc is 1 ounce) in about 24 hours and needs a new draining container. He is still draining a lot of fluid for how small he is. The tubes were placed Wednesday and today is still draining a lot.

They ran some tests to see if he has a blood clotting disorder, they think that may have caused all of this...unfortunately yet fortunately his tests came back negative. They are still working on figuring out the cause of all of this.

The good part to my week is I finally got to hold my baby for the first time in 4 weeks, the hospital allowed me to take pictures, and I have posted them. These were taken yesterday so they are about as recent as I can get to showing all of you what he looks like now.

Thank you again for all the prayers and thoughts that is all I am asking for right now...we are very blessed for all the thoughts and prayers you all have given us. I hope you all have a great Easter weekend.
March 24, 2008
 
Happy Day after Easter!!!!
 
Some of you have asked us what is the update, and I promise I have been trying to sit down and get something out...I promise I will try to get better at this.
 
Not sure if everyone is up to speed or not.  Here is some general stuff that has been lingering.  Gabriel has a blood clot that the doctors found at the beginning of last week in his chest.  Probably the reason why his right lung still has not been getting better.  They found the clot by default when trying to fix one of his IV lines.  He also had his Thoracic Duct traumatized and sweeled immediately over night, the doctor placed a chest tube on each side of his chest.  She cultured the fluid coming out and thought at first he had an infection and after looking at the fluid again she said it looked like Chyle, which I believe she said he was leaking Triglycerides.  Meaning the higher they increased his feedings the more he was leaking because with the Duct leak he was unable to process the fats in foods.  Therefore it leaked causing him to swell immediatley.  On top of that, they did some blood cultures to find out he has an infection in his blood stream, thought it was from the IV lines in him as the longer they stay in the higher risk of infection you can get.
 
Today, he still has the blood clot.  The doctor that started this morning explained to me that his Thoracic Duct was traumatized from the pressure of the blood clot in his chest and that is what caused all the swelling.  He is still draining a lot.  The night nurse told me during her shift he drained 300+ mL total from both chest tubes.  Kind of scary that he is still draining so much from such a little guy. 
 
His blood cultures are still coming out positive, they have tested all the IV lines that have been on him and a regular peripheral line, which have come out negative, meaning the infection is coming from him not the IV lines.  The culture results have come back with a final report.  The name of the infection in his blood is Enterococcus Faecalis.  I have been trying to research all morning about this.  He is on a third antibiotic to hopefully kill the infection.  The only bad part is the infection can't get better without the clot getting better, yet they cannot remove the clot until the infection is gone.  I am really hoping the 3 antibiotics can work together to get rid of this thing before it gets too out of hand.  One of the problems with the 3rd antibiotic they placed is it is not compatible with his HyperAl (which is his only source of food nutrition going in him) he gets the 3rd antibiotic 3 times a day for an hour and during that time they need to stop his nutrient feedings.
 
Hopefully sometime this week the doctor wants to see if they will be able to to remove the ventilator.  I would love that, but at the same time I want it to happen when he is ready.  Jose & I got our easter present from the hospital this weekend though.  We got to hold Gabriel for the 1st time in 4 weeks...We were sooo happy, granted we were sitting and Gabriel was on a pillow, but we didn't care.  It definitely made our Easter weekend!!!
 
Little by little he is getting better, just seems like we take 2 steps forward, 1 step back.  But at least we get to move forward.  We are very thankful for all the prayers and all the thoughts.  I know without all those thoughts and prayers we would not be where we are today.  Thank you soooooo much again. 
 
Love,
Xandra, Jose, Gabriel
March 26, 2008
 
Hello everyone,
 
Here is an update so far on Gabriel.  Yesterday morning he was doing great...at least what I thought was great.  He was breathing well in the morning with the ventilator, and he took a minor turn in the afternoon.  They did some lab tests on him and found out his Hemaglobin was 6.8 (needs to be above 12), his sodium levels have been low and they are trying to compensate in his nutrient fluids and extra doses to bring it all up.  He got a blood transfusion yesterday afternoon.  His Hemaglobin last night was 13 and this morning was 11.7  they still are not sure why his Hemaglobin keeps on dropping.  His central line is still leaking and they are having a hard time with that.  Today, the doctor will be re wiring his central line to see if she can fix the leak, at least this time as this is not the first leak in his central line.  He is still getting his Lovenox injections(blood thinner) twice a day, and they check his coagulation studies 4 hours after every injection.
 
He had an Echo done yesterday and a chest x-ray this morning.  I still do not have those results yet and not sure of the plan for today as I have not seen the doctor yet this morning.  But I will keep you all posted.
 
So far today he looks nice and pink...yay!!! He has been sleeping this morning even a bigger yay!!!
 
Thank you again for your thoughts and prayers.  Our family is loved by a lot of people and we are very thankful!!!  May God Bless you all!!!

March 27, 2008
 
Hello all again, yet another update...
 
The echo and x-ray of course show the same, the clot has not gotten any smaller yet has not gotten any bigger, the x-ray shows the lung has not changed at all and has not gotten any better.  Yesterday the central line was leaking (this is the 3rd one that is leaking) the doctor tried to re wire the line to fix the leak, and was unsuccessful. 
 
The plan today is to have one of the Cardiologist try to place another central line in his groin area, if he is unsiccessful then he will place the line in his liver...I am kind of paranoid about that one.  He has gone over the risks with these procedures with me, and one of the risks is bleeding...well he has been on a blood thinner for the clot for over a week now and his last dose was last night.  The doctor informed me that he is aware of the Lovenox(the blood thinner).
 
He said while he has him under the anesthesia, he will try to look at the clot, if it is something he can take care of he will, he talked to me about doing a balloon angioplsty if he is able to, if not then they will do a stent at a later time after the infection has gone away.
 
His urine output doesn't look that great, but then again I do not know where he should be since he is still draining from the chest tubes.  They have given him 2 doses so far of albumin today. 
 
So far I think that is the news for today.  Still not really moving forward anymore, just starting to feel like we are at a stand still.

April 3, 2008
 
Hello everyone,
 
Sorry it has been awhile since I sent an update.  I believe my last one was last week about placing the central line.  The cardiologist was successful in getting the line in his groin area, yeah it's not in his liver!!!  Since then, the line is great no clots, no leaks.  During the course of all the moving in taking him to the cardiac cath lab to have the line placed, his left chest tube came out of place, and they removed it on Saturday.  Of course, Saturday night he started to swell yet again and on Monday he had the left chest tube placed again.  Since Monday he has lost a lot of fluid, yay!!!
 
We had a multidisciplinary meeting yesterday with the doctor to discuss all that has happened and the route they are trying to go.  The clot is still there and has not gotten any bigger, he is still on Lovenox (the blood thinner).  However, his blood cultures have been negative since March 26th...Yay!!!  Now we are trying to see how long the cardiologist wants negative cultures before he places the stent for the clot.
 
His right upper lobe of his lung still looks pretty bad, and a few people told us they didn't think he would get function back on that lung, however, the doctors are still trying to get function.  If they cannot, they all say that he will be fine with one lung, he breathes over the ventilator great and they think he will do fine.
 
Today he had another Bronchoscopy (they go with a scope and look down in his lung and try to get the collapse back up).  This is his 3rd one.  The surgeon told us he was able to get in, last time he couldn't.  He was able to get out 20cc (30cc = 1oz) of white sticky mucous...hopefully this will help his lung come back.
 
We also discussed in the meeting about his Thoracic Duct that is still leaking fluid, although he is not getting any feedings.  They are trying to wait it out to see if it heals itself, if it does not then the surgeons will take him again to the OR and surgically fix it.  The doctors are really trying to avoid that, so we will see.
 
The update is not exactly great news, but at least some positives and seems like we might be moving in the right direction.  We really hope so.  He is now 10 weeks old (his due date was 3/31/08) and we have now been here going on 7 weeks in ICU.  Again, we really appreciate all the prayer that is going out for our little guy.  He is a strong little boy and a fighter and I thank GOD everyday for him.  This situation we are in has made both Jose and I stronger as individuals, as a couple and as parents.  It is so funny how we learn something from Gabriel everyday and all that he is teaching us, yet he is just a baby that can't talk to us.  Thank you all again for your thoughts, your prayers, and your concerns!!! 
April 8, 2008
 
Hello everyone,
 
I wish I had better news but have been a little overwhelmed the last few days.  So, since my last update a lot has gone on and I just don't know where to start...
 
Jose was able to glance at one of his chest x-rays and said it looks better as far as the collapse.  Sounded like great news and it is as far as that is concerned.  Sunday the doctor ordered a doppler test (a test to see the clots if any in his circulation) and the plan was to place the stent on Monday.  On Sunday they were not able to do the test as they did not have the right size probes for how small he is.  They did the doppler yesterday morning, and took him to the cardiac cath lab in the afternoon.  I guess you could say that I mentally prepared myself that the stent would be placed and all would be fine, not expecting to hear the cardiologist tell me he was unsuccessful in placing the stent.  He has 1 clot, it just has grown since it has been sitting for so long, due to his blood cultures coming back positive.  His left/right Jugular Veins and the left/right Innominate Veins are 1 big clot. The cardiologist injected dye yesterday to see that his body has found other routes to supply blood flow by means of other blood vessels.  Which is reat thank goodness.  I guess when he did his own ultrasound yesterday in the lab, previous tests might have shown the jugular veins, but in actuality was the clot itself. 
 
So now what is the next step???  Well, now the doctor is consulting the general surgeons about going in to do something about how much he is leaking from his chest tubes.  He has been putting out 500cc of fluid total in 24 hours from his chest tube.  Yesterday he put out 700cc in 24 hours.  30cc = 1oz.  If the general surgeons do not feel comfortable in doing this procedure (again because he is so small) they will get the cardiovascular surgeon to do it.  The procedure is called Pleurodesis.  I have been trying all morning to do some of my research on this procedure.
 
As far as the clot, it sounds like they want to keep it in place since he is finding other means of circulation.  They have been giving him more blood and proteins such as Immunoglobulins and albumin to make up the fluid and proteins he is losing.  He still is not able to eat formula.  He still has the TPN (the nutrition fluid by IV). 
 
Almost sounds like the doctors are not sure where else to go or what else is happening.  The doctor today wants to try to test the fluid coming out to check his Triglycerides to see what his count is.  I guess we will see.
 
I still have not seen the surgeons to know if they will be doing the procedure or when it might be.  When I do find out, I will do my best to notify everyone.  Thank you again for all your love, support and prayers. 
April 10, 2008
 
Hello J
 
Thank you to all who have been praying for mine and Walter’s godson, little infant Gabriel.  
 
Today, mama Xandra got some shocking news from the doctors that they would have to perform a “last resort” surgery.  If it didn’t work, then there would be nothing else they could do for Gabriel.  L
 
The short story – All kinds of complications, but mainly, he developed a blood clot in his vein near the neck, which is still there and has grown larger.  This week, they attempted to insert a stent to help open the vein up, but that was unsuccessful.  They DID find out that his body has found other routes for blood flow, which is a good thing.  Doctor’s have determined that is not the main issue anymore.  Gabriel’s thoracic duct is leaking (has a micro tear somewhere) which does not allow him to retain the nutrients he needs to survive.  He has been surviving on fluids and nutrients being pumped through IVs into other areas of his body to give him his nutrients, but its all leaking into his lungs.  The thoracic duct leak has caused fluids to go into his lungs, which is why he has been draining so much fluid from his lungs.  I believe this week, Xandra mentioned an average of 500cc’s are being drained within a 24-hour period.  (30cc = 1 oz.; therefore about 16 oz, which is 2 cups of fluid.  Not good, especially with as small as he is.  I believe he weighs about 4 or 5 lbs right now, not sure).  Tuesday he released 700cc’s.
 
I called Xandra this afternoon and THANK GOD they have opted not to do the surgery, as they have decided to wait it out a little bit, reduce his fluid intake and see how he does.  Apparently, his surgeon and doctor were not on the same page as with what to do and Xandra stood her ground, did not sign release for his surgery until everyone was on the same page.  Thank goodness for mommy instincts.  The surgery has a 50% success rate.  At least it has been put off for now.  It is very difficult to clamp the leak as it is microscopic and they would need to open him up to find it.  This is very traumatic to his little body, especially with everything else he has already been through.  
 
Gabriel and his family need so many prayers, so I would like to continue asking for intercession for this little guy.  I am just beside myself with Xandra & Jose’s strength through all of this.  Please believe in the power of prayer and stop for a moment to pray for Gabriel and his doctors.  This feels like such a helpless situation, as Gabriel’s recovery is so fragile, and ultimately in God’s hands.  But we have FAITH!!!!
 
Thank you for your intercessory support and God bless.
 
~ Joelle
 
April 15, 2008
 
Good Morning everyone,
 
Sorry again for the delay in the email, as some of you may know during all of this craziness we moved this weekend.  Since last week, the surgeons decided not to do the "last resort surgery" it was a crazy day.  I don't even know where to begin to explain that day.  I guess in short the surgery has a 50/50 success rate and they did not feel comfortable doing it, the surgeons stopped the suction on his chest tubes to see if it might slow down, so now we are waiting it out to see if he slows down his output from his chest tubes.
 
On Saturday, they did a venous test to see if he was clotting from the legs up since we know he is clotted off on his neck.  The test came out good and from there he went straight to the OR to have the Broviac catheter placed (it is a long term central line).  One of the nurses told us a kid had one placed at 6 months and just came back to have it removed, he is now 9 years old...wow, I hope he doesn't have it in that long!!!  Everything went fine on Saturday.
 
He now has the Broviac placed and the central line is removed, he needed another transfusion over the weekend as he lost some blood from the Broviac placement, but so far so good.  Yesterday's x-ray showed that he was retaining fluid on the right side so they added the suction back on his tube.  This morning the surgeon removed the suction, his output in 24 hours was 350cc form his right side and 0 from his left.  The surgeon thinks his left side might be healing so if they had to do surgery at least it would only be on one side.  He has had 0 output from his left side since the 13th, so today the doctor wants to remove the left chest tube, in the hopes it will stay out.  The doctor would like to try to feed him, but I am not sure if he will or not. 
 
He was weighed last week and weighed 5lbs 3oz.  On Sunday he weighed 4lbs 4oz.  I am concerned about his weight loss, so today they will be re-weighing him. 
 
So far, I think that is all of the news.  I wish we had better progress, we are still paranoid about the right side, but I hope he is able to heal on his own without the surgery, so we will see.
 
Thank you all again for the thoughts and prayers...I know I say thank you all the time, but I know our prayer chain for him is working, he has and is already going through so much, he is a fighter and I know it is from all the prayer.  Thank you again from the bottom of our hearts!!!

 
April 27, 2008
 
Hello everyone,
 
Sorry it really has been awhile since I sent an update.  Things got just a little hectic, and frustrating.  Unfortunately we would end up taking our frustrations out on each other (arguing) which is never any good...Anyways, so here is the most up to date on Baby Gabriel
 
A few weeks ago the ICU doctor wanted to do this last resort surgery for Gabriel, because they have no more treatment for him, as they have done everything they can do for him.  The surgeon was consulted and he was scheduled for this surgery however the ICU doctor and surgeon unfortunately were on 2 different pages leaving me in the middle to choose.  Icu wanted a different surgery from the surgeon, Icu wanted the right side done (draining more fluid) the surgeon wanted the left side done, Icu wanted to pursue the surgery, surgeon wanted to wait.  In the meantime the surgeon sat me down (3 hours before surgery) to explain the risks, pros/cons and he would come back in an hour so I can tell him my decision as to go through with the surgery or not. 
 
Now to go over everything the surgeon said,  the procedure he wants to do is a 50/50% risk it will get fixed, he said flat out from the get go that he wants to wait to see if Gabriel will heal himself as he has seen it be done in weeks/months (months scare me).  He said he may not be able to fix the hole as it is microscopic and there is risk he wont find it to fix it.  On the other hand he may find it by luck and fix it, except the pressure may find another place to go to drain in his body (not so good).  I wish I could say this decision is so easy to make, but is so hard to decide when everyone says this is their last resort. Needless to say the Icu doctor walked in that day, sat down next to me and told me the surgeon was not going to do the surgery regardless of what we decided.  I am not going to force a surgeon to do surgery on my child if he doesn't want to be in the OR already...that was hard.
 
On to last week...the attending from Icu last week tried to pursue the surgery again, he spoke with the surgeon of course, we were not involved.  The outcome was if Gabriel continued draining as much as he was or worse, he would consider surgery this week.  If he decreased, they would hold off.  We understood tha and was content with that, b/c now we felt like we were going somewhere, and something would be happening.  Throughout last week Gabriel's weight was on a rollercoaster ride, sometimes he would gain, and some days he would lose. On April 13th Gabriel's left side healed himself.  He stopped on that side...yay!!!!  I just wish his right side now would stop.
 
On to this week...Monday (of course now I am back at work) the surgeon re-evaluated Gabriel and said he would wait again.  Last weekend he drainied some of the most, one day 480cc, another 360cc...His average was the same.  Of course, I hit my frustration breaking point and went to the hospital to see what was going on.  Only to find out the Icu doctor I thought was on our side, she had a conversation with the surgeon that afternoon, and I found out the next day she agreed with him to wait.  On Tuesday I asked the day shift nurse if we could have a meeting with the attending Icu doctor and the surgeon (obviously not the same day) sometime so we could kind of all be on the same page, and appearantly she didn't like that answer and called me directly at work and told me she cannot pry the surgeon out of the OR for a meeting (which hit me the wrong way b/c as a parent I have a right to talk to my child's doctor and that the surgeon is).  She said if we had any questions we could ask her the next day as she was on call at that time...we were not happy about that at all, and for the first time in the 9 weeks that we have been here I finally felt like we are getting the run around.  In the meantime Gabriel is still losing weight.  On Monday he was 4.75lbs, Wednesday he was 4.6lbs  Friday he was 4.5lbs Yesterday he was 4.4lbs. 
 
I spoke with one of the other surgeons I don't remember his exact words But I think he said Dr. Morgan (Gabriel's surgeon) would do the surgery this coming week.  I know he was going to re access him this week (it is week 6 with the chest tubes and the draining)  So I don't want to get my hopes up for the surgery, but at the same time not sure if I should get my hopes up if he goes through with the surgery.  Now I am not sure what it is I want. 
 
This weekend was a little out of the ordinary as Gabriel doesn't like to follow the medical books, as we all know.  His heart rate stayed in the 190's to 200's almost all weekend.  Unfortunately during the process of figuring out what was going on, his sedation was increased, he got multiple doses of morphine, versed and ativan all which put him to sleep but did not touch his heart rate or breaths per minute.  Everything that would have caused the highs has already been ruled out, so last night they put the suction back on his chest tube and immediately his breaths per minute lowered (yay!!!).  Did a stat chest xray and the the pneumothorax(the air in his lung) was the same, so they did a CT of his chest with and without contrast after placing him on suction, and the CT looked slightly better as far as the Pneumothorax goes.  His right upper lobe of his lung unfortunately is still collapsed.  Gradually, his heart rate lowered and is now from the 160s-180s.
 
Based on his labs this morning, the doctor is going to consult the Endocrinologist as his cortisol levels are low.  So we will see what happens.  In the meantime, the nurses are having fun with Gabriel, he has his boxing gloves on and he gets his daily mohawk, which suits him very well, lol.  Sorry for the long novel.  I promise I try to get better at doing it more often.  Thank you again for all your care, concern and prayers.  We are very special to have sooooo much supprt from all of you and I can't wait to be able to tell Gabriel when he gets older just how special he is and how loved by soooo many people he is.  We Love you all!!!

April 28, 2008
 
Hey everyone,
 
So here is the latest update, the surgeon has decided to go through with the "last resort surgery", Gabriel is scheduled tomorrow at 2pm.  The nurses all say he will probably go earlier so we will see.  Please keep us in your prayers tomorrow afternoon.  I have attached some pictures that were taken in the last few days.  One picture is my parents and Gabriel (my dad's first time holding him in 2 months), another is baby Gabriel and us...he is in his new bouncy seat for the first time (thank you Mimi & Ricky), and Gabriel in clothes for the first time in 2 months (he's in Premie clothes that are still too big)  Thank You all for your support and prayers for him.
April 29, 2008
 

Good morning :-)

 

Just wanted to let you know that baby Gabriel will after all be undergoing surgery today (Tuesday 4-29-08) around 2pm, maybe even a little earlier.  Please think (and most importantly) pray for him, the doctors performing the surgery, and his family as all anxiously await the next step.  The family has been told that this is a last resort surgery and a 50% success rate.  He has been in PICU for 9-10 weeks now.  But our God is a powerful God and nothing is impossible in His hands.  Prayer and postive thoughts are very powerful.  It's the only thing we can do to support one another and the De Jesus family.  God bless you all and thank you for your support for Xandra, Jose, and especially little Gabriel.  Xandra has expressed many times her gratefulness for the love and support they have received during this time. 

 

~Joelle & Walter

(proud godparents) :-)

April 30, 2008
 
Hello everyone,
 
I know a lot of you wanted to know the outcome from yesterday...and I apologize for not giving an update last night.  Yesterday ended up being a little harder than we thought.
 
But first off I wanted to say I got to see my brother (he is in the Navy ad has been out at sea for the last 2 months)  He lives in CT.  They pulled into Fort Lauderdale Monday night and he was granted leave and he rented a car and surprised me yesterday at the hospital with my parents...Yeah!!!!
 
OK, so on to Baby Gabriel...so yesterday was his surgery as many of you all know, we were expecting the surgeon to go in and place clamps on his Thoracic Duct (Thoracic Duct Ligation) to hopefully stop the leaking, however the leak as I said before is very microscopic and would be hard to find.  While the surgeon would already have the right side open he was going to try and re-inflate his right lung.  The surgery was scheduled at 2pm, and at 12:50 they were ready.  We followed baby Gabriel to the pre op area and were able to give him our kisses from everyone and ourselves of course...
 
I would have never expected to encounter what we did yesterday and either was the surgeon.  We ended up getting an update around the first half hour mark that the surgeon made an incision and he started bleeding uncontrollable and they were having a hard time to stop it, a few minutes later we got another update that the more he tried to cut, the more he would bleed out. (He is still on Lovenox-the blood thinner)  Lovenox was held that morning only, so of course I freaked out thinking about the Lovenox.  We were not expecting to have the surgeon come out and pull us into a consultation room just Jose and I.  He explained the bleeding was under control however, the more he tried to see the lung he was having a problem and found out his entire right upper lobe of his lung was completely calcified and would be the cause now of all the bleeding.  He told us he needed to now remove the calcified upper lobe and the surgery is very risky in the sense of it can go really well, or really bad and we end up worse case scenario with Gabriel in Heaven.  For me it hit me right then and there and for Jose it took awhile to sink in, so needless to say the rest of the time in the surgery waiting area, we felt like we were on pins and needles.  Finally once the surgeon came out and told us the surgery was successful(in the sense of he made it through it) we were all sooooo excited, he was able to place the clamps in the thoracic duct, however it will take a few days to know whether or not it worked and was successful.
 
Within the hour of coming back to ICU, he was already awake and actively moving around, I think this was the best he has ever looked coming back from the OR.  However, last nigh seemed to be a different story.  Last night his heart rate seems to stay high from 170s-210s, yet again he looks comfortable, this morning when I woke up his blood pressure was very very low, the lowest I saw was 28/20 (I had flash backs from the night he coded)  They will be monitoring him all day today.  They wanted to give him Morphine, however that would drop his blood pressure so they are trying to keep him comfortable yet keeping his vitals good.
 
Thank you all again, I know how much prayer he had going out yesterday, and all the visitors Gabriel got yesterday.  I know he has made a special place in everyone's hearts and this child is teaching us all a little bit about life everyday, I know I do not take anything...ANYTHING for granted anymore.  Each day we have with Gabriel is a blessing and the power of prayer is sooooo strong.  I know without all of the prayer yesterday for him he would not have made it, those surgeons had angels in that OR helping guide them through the procedure and we are so very grateful that we still have Baby Gabriel here today!!!  Thank you all and I love you all!!!

May 1, 2008
 
Hello all again,
 
I am sending out a post surgery update.  As you all know how the surgery went on Tuesday, Wednesday ended up becoming a very eventful day.  I promise I keep on having these pep talks with my little man to make everyday a boring day, boring is great, uneventful is great...but he is doing his job as a son and not listening to his mom...lol it's my own little joke to keep me smiling through all this...
 
So on to yesterday, he started to swell as he is suppose to after surgery as he gets fluid overloaded, with the swelling, they had a problem ventilating him while he was on the ventilator.  Hos CO2 (what you exhale) was showing on the monitor 115 (that number should be 35-45) they tried to manually ventilate him with the O2 bag and still the number was not coming down, they tried some blood work to check his blood gases and according to that test he was in his 50's so we thought it was the monitor reading incorrectly, after changing all the tubing and everything out the number did not change, so they tested his labs on another machine and it read 135...needless to say the number was very out of range.  Due to that Gabriel Had his ventilator changed out yesterday to a more powerful one.  They call it the ostillator (this machine is usually used on patients that are in a coma) The pressure on his other ventilator was already maxed out and this new one is able to give him more pressure to hopefully bring down his blood gases.  His oxygen concentration is 60% (21% is room air) This new machine gives him fast, smaller puffs of air, This machine is breathing 600 breaths per minute, yes I did write 600 breaths per minute. Because the number of breaths is so high, he would not be able to figure out how to breath over it, so he is on a medication to paralyze him while he is on this new ventilator machine.  Needless to say this room was a very busy room yesterday afternoon all the way through out the night.
 
Whe I woke up this morning, I saw the pressure setting on his ventilator had been raised and that was because his CO2 started to raise again in the night.  So they are trying to bring that down.  His blood pressure was very low yesterday and they added on Dopamine (a medication to bring your blood pressure back up) Through out the day yesterday, he was not peeing at all (worried about kidney failure)  Last night they gave him 4 doses of Lasix (a diuretic) and he finally went pee!!!! YAY It is one of the highlights of the day.  From 6am this morning to about 9am this morning he put out 60cc (2oz) YAY!!!! That is great!!!  His heart rate now is still very high it is 200 as I am writing this.  It is most likely since he is swelling he might be dry on the inside (ironic right)  because all the fluid isn't in his vessels, its in his tissues.
 
His chest tube output has decreased dramatically, his is putting out now about 60cc in 24 hours versus 300-400cc in 24 hours.We are sooooo happy about that.  I will do my best to keep everyone up to speed on little baby Gabriel.  It is just another speed bump in the road, he has already gone through so much, I know deep in my heart he will come thorugh this.  He is a very special little guy.  Again from the bottom of mine & Jose's hearts we really appreciate all the prayers and support.  We love all of you!!!

May 17, 2008
 
Hello everyone,
 
Again, I am sorry for not sending out emails sooner.  This past week has been a really rough one for all of us.  The doctor's tried to witch him back from the Oscillator (the beast of a ventilator) to the conventional ventilator.  Gabriel did not seem like the switch and it has gone down from there.  His body I guess was so stressed out, his white count went through the roof.  But all his cultures came back negative with no growth. 
 
This past Monday night, from 8pm to about 8am he had no urine, not even a single drop.  Tuesday Jose and I kind of knew the reality of what was coming.  Based on his labs at the bedside and his vitals changing so quickly, the doctor pulled me aside to talk to me, and the conversation was not good at all.  Based on how that morning was going, he said it would not be too much longer before Gabriel's heart and lungs would fail.  He talked to the kidney doctor and they said a renal ultrasound would not help any and he was too fragile for dialysis. He honestly did not think Gabriel would have survived out of the morning.  He has been on mechanical ventilation today is 12 weeks and sooner or later he would start rejecting it.  The good news of Tuesday was he survived and is still here today (thank you for all that knew and prayed for him and us).  They rest of the week, was an hour to hour basis and day to day basis.  His urine output still is not great, but we have some.  It is just not enough to help take out all of his swelling.  Once his swelling is down, hopefully they will be able to ventilate him better.
 
The doctor last weekend talked to Jose and I about possibly transferring somewhere else, as Gabriel has already stumped 40 doctors here in the hospital.  The doctor said he cannot transport him on this ventilator, but once on the conventional ventilator they would discuss the possibility of that.  The doctor said he would probably go to either Shands Hospital in Gainsville or Miami Children's.  The transfer really scares me, because I know financially we will have a problem.  But I know it is to help baby Gabriel get better.
 
Sorry for the short email, but it just has been a rough week on all of us, and not exactly the happiest.  But again from the bottom of our hearts we thank all of you for your support and prayers for all of us.  We appreciate all you have done for us.  We are very lucky and special.

June 12, 2008
 
Just wanted to thank you for your prayers with our little man Gabriel.  He's had a few good weeks, definitely better than May 13th.  We found out this week that his left femoral central line has clotted off.  Now he is 3 for 3, all 3 central lines have been clotted, and his right fem has the broviac, so nothing can be placed there.  His right lung is still down, and pretty much is functioning off of his left lung only.  The Oscillator has ben removed, and he is on a conventional ventilator now.  The recently restarted his formula feeds again with a new formula that is just proteins and vitamins, it is 100% fat free for his chylo.  Since he was on the paralytic for such a long time we are still waiting for him to wake up.  We are handling our situation as best as we can. 
June 19, 2008
 
Gabriel Omar DeJesus received his angel wings and entered the gates of Heaven on Thursday June 19th, 2008 at 11:05pm after a lifelong struggle to hang onto life.  He blessed all who got a chance to meet him and changed many people's lives even those who never met him.  Gabriel's family are better people since meeting an angel and spending time with him here.  Our little man, you are not forgotten and never will be...we love you always and forever!!!
June 20, 2008
 
Hello everyone,
 
I wish I could be sending out a good update about our little miracle baby G.O.D.  The past few weeks have ben great for him, He was started on a formula feed that was 100% fat free so it would not affect his chest drainage.  He had a great night Wednesday night, and a great start to yesterday and unfortunately he took a bad turn in the afternoon.  He was dropping his o2 sat and his heart rate would go down in the 30's and he was not able to bring it back up without medication...needless to say yesterday was a very busy day trying to get Gabriel stable.  The doctor approached us and said she has done all she could for him and it was the beginning of the end right now.  I almost wanted to be in denial, because he has made so many turns, he has proved the doctors wrong so many times.  She asked if we wanted to hold him and we said yes, it was the first time we held baby Gabriel since the day of his last surgery April 29, 2008.  We were very thankful  and happy we were able to hold him, his vitals were very unsteady and we had to put him back on his crib because he could not maintain his body temp.  To make a very long sad story short, Gabriel ended up entering the gates of Heaven, last night at 11:00pm Gabriel Omar DeJesus left us.  But we know he is in a much better and safer place and he is not suffering or in pain anymore.  He is now our angel that is watching over us, I know that deep down inside.  Any future kids we have if we decide will always have a big brother Gabriel.  He was such a fighter, and taught us so much everyday he was here.  He taught me to live everyday to the fullest without any doubts or regrets, because the next day you may not have that chance again.  Gabriel brought us all closer together and he will always be there for us.  He is our angel in heaven.  I will send out an update as far as any services.  We will be trying to get all that together today.  Thank you for all your support in all these months for Jose and myself.  It really is appreciated all the help and support we received.  Gabriel appreciated also all the help and support his parents and family received.  I know he has made such an impact on everyone even if you have not seen him.  We all hoped and prayed that he would be able to come home again, and he did, he went to his home where he is safe and sound.  Thank you all again so much for your help big or small, it was appreciated from the bottom of our hearts.  We love you all...
 
Love The DeJesus Family (Jose, Xandra & Baby Gabriel 1/23/08 - 6/19/08)