Waiting for the New Year

And what a year it's been...is there any way to shred up the sad and scary parts? I can't wait to start fresh. It's is even greater news that if Isaac keeps doing well, we'll hopefully be out of here by the first week of the New Year! By the way, he did great through his last procedure and came out looking like he didn't have anything done at all. Since the procedure took a good 6 hours, they left him intubated that night and let him rest through the night. Ernest had left that same morning to go get Eli and my mom from our halfway point and when I arrived in his room at the hospital, I almost cried. He was happy, energetic, and already breathing slower than he was normally breathing. Since then, he has had no more episodes of coughing up blood or better yet even coughing. Although, one lung is useless, please pray that this did the trick. I don't want him to go through another surgery just yet. A couple of nights ago, Isaac spiked a fever at about 3 am. They drew all kinds of cultures to see if it was a possible bacterial infection. Ernest and I already knew that the PICC line that he still has was probably the culprit. They started him on antibiotics yesterday and today we found out that it is most likely from the PICC line. Since then, it has come out and he now has a PIV on his foot. Now it really is a question as to how much longer we'll be in the hospital. It could be the first week of the New Year unless Isaac acts up in any way again. We have also been warned that after we get discharged from the hospital, that we will have to stay locally for a month or two more. It really depends on how Isaac does during those months. So, for now....still waiting!
No words can express the gratitude of our wonderful friends and family, especially EOG. Its truly amazing how fast EOG reacted and helped with the costs and food for my mother-in-law's funeral. It was something totally not expected and were not prepared for. I don't know how we could have gotten it done without you. You made it possible to forget all the financial worries and just get it done. Clarissia, we would also like this opportunity to thank you, your family and anyone else that made Eli's Christmas so great. Let me tell you....that kid got spoiled! He received all of his Christmas list AND MORE! We were all able to spend it together at the hospital. Despite the small hospital room, it really was more than we could've asked for. It looks like we'll be ringing in the New Year in much the same way. We also want to thank the people that do not know us yet willingly give what they have to help. Sharon, thank you so much for those goodies that you brought to our hospital room. The hosital food and restaurants around the med center are getting a little monotonous! We love each and everyone that has helped us in any way (even by just talking and visiting) and greatly appreciate EVERYTHING!!! With that said, let's put all our worries behind us and get ready for this BLESSED NEW YEAR!!!!! God Bless You all!



Happy New Year Glitter Pictures




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Update 1

We have finally received an update...they have successfully occluded one of the arteries that could be a culprit. They are going to take more pictures and if they see anymore it'll take a little longer but if not then he'll be out and ready to be seen.


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*Crossing Our Fingers*

Today is another big day. Isaac is back in an interventional catheter to hopefully fix his problem. His cath doctor is doing this together with an interventional radiographer because it'll show the smaller veins and arteries a whole lot better. His cath doctor has spoken with the cardiology team and with the radiologist and who know whom else to get all their opinions on what their plan was. So what they told us was that they were going to see if they could plug any abnormal arteries that they saw. We're crossing our fingers that after this, he may not bleed anymore and his respiratory rate might be a little lower. All of the docs have said that there are no guarantees that he won't bleed again, but that is why he is keeping us locally for awhile. So, I'll update more when we get more info on how it's coming along.

In the meantime, we are staying at the Ronald McDonald House that is located a few blocks away. It is such a blessing to have a place like this. This place has everything we need that we would have at home. They provide a family pantry, and family fridge and so forth. We also have an alotted pantry and refrigerator space for groceries that we want to get. Plus, lunch and dinners are donated pretty much everyday. This is probably the busiest season too! Yesterday was an exciting day...the Houston Rockets came and brought presents and took pictures with the patients and families. They gave us a present and a Houston Rockets onesie for Isaac and I was also able to get a Houston Rockets basketball for Eli. I'll post the pictures as soon as I get them. If all things go well, Eli is scheduled to come tomorrow with a generous co-worker who offered his time to take Eli and my mother halfway to Houston. Ernest will be driving the other half. We thought that this Christmas might be horrible with the flu quarantine and all, but we just found out today that Eli will be able to visit his brother in his room (whichever room it may be). When we've been here these past months, Eli was not allowed in the patient room to see his brother because of flu season. Siblings were allowed in the hospital but not in the patient rooms. I'm so happy that they were nice enough to allow him visitations. We're happy, excited but stressed at the same time. I hope everyone is enjoying their holiday! Love you all! Now here are a few pictures for you to enjoy....

This one was taken shortly after extubation a few days ago.

This is Isaac resting yesterday....

And this is the cute ornament with his name at the Ronald McDonald House.




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He is out!

Isaac is out of his procedure and still stable. His cath doctor came to speak to us and told us basically what we already knew. He said that he could not get into the veins to open and stent them because they were too long, narrow and almost completely blocked. He said that pressures were taken and that everything is still well and his left lung is already doing all the work and taking in all the blood flow just fine. He did give us a breath of fresh air when he told us that there are kids with almost exactly the same thing and because that diseased lung is not giving them problems, then they just leave it alone. But, because Isaac is bleeding, they feel it is time to do something about it, but all of the team will have to talk about it tomorrow morning. The two options that were talked about was either plugging the right pulmonary artery or to go ahead and remove that whole right lung. I have been reading many articles on living with one lung and it is very possible. Just like we only need one kidney, we would only need one lung, but what scares us is the whole surgery and recovery thing. The option of plugging the pulmonary artery has not been studied extensively, but is still something that they want to consider. I would like it considered also if it means it could work and no surgery (for awhile at least). His cath doctor thinks it COULD work with minimal problems. The risks with this is of course infection in that unusable lung, more bleeding, etc.......but he still thinks it could be worth a try because its not really invasive.

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UPdate

It took longer than Normal because of artery access but they were able to get in. One of the main arteries in the groin was totally blocked and inaccessible and the other artery was blocked but still accessible. So they are in the process of placing stents in there so that it stays open. They were unfortunately unable to do anything about the lung problem, so we have yet to speak with the doctors about our next option. If no other problems exist then it looks as of that lung will have to be removed. They were also able to go ahead and perform a biopsy of his heart muscle. This is done for all transplanted kids to check for rejection. He was not scheduled for one untill next year but I thought it would be a good idea to go ahead and get it done. This is all the info I have for now.

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A Big Day!

So today, he is in the cath lab and they just took him back about 10 minutes ago. What they are trying to do today is to go and see if they can unblock and stent his right pulmonary veins. This cath will also give them more information as to if anything else is going on (with his heart, his other lung, etc) which hopefully all is okay. Please pray for my son and for the doctors that are caring for him right now. I'll keep updating as I receive updates. God Bless you all!


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When it Rains it Pours!!!!

We thought the hardest part was over.......

Our hearts have just been chewed up, spit out and stepped on....so let me explain.

From the last time that I posted, we had been released to go home (Midland) after Isaac's last bleeding episode thinking that it would not happen again because we were given medicine to cure the probable ulcer somewhere in his GI tract. Well, like I said, "when it rains, it pours." On our way back home from Houston, Ernest found out that his mother passed away from a heart attack. The heart attack came from her having a UTI, then it got to her kidneys and finally her blood got infected. When the blood becomes infected, the blood is poisoned and starts building plaque and affecting other organs. Well, this is what happened and she passed so unexpectedly. To make a long story short, we had many people visiting and the funeral service was scheduled for Saturday. Saturday, Ernest was out running last minute errands and I was home with the kids and starting to get ready when I heard Isaac coughing on his monitor. I immediately went to go pick him up and knew what was about to happen...he started coughing up blood again. I called 911, they picked us up within minutes and headed to the hospital. Ernest showed up a few minutes later and we were told they were getting paperwork ready to airlift him. Ernest got to Houston with Isaac at about noon and I caught a plane at 4:10pm and got there an hour later. While in the emergency room, the doctors said that it was in Isaac's best interest to be intubated. So when I arrived, it was hard to see my son with a breathing tube in his mouth. We all knew that it WAS in his best interest and dealt as best as we could. That night, he was kept sedated and comfortable so as to keep him from pulling out the tube. We were called in the next morning because they decided to gett the scopes going to see what was going on once and for all. The procedure took all but 30 mins and when the doctor came to speak to us, he said that the area of bleed that he saw was most likely the culprit. He said that he could not see the details and extent of it, but that the bleeding was coming from the left upper lobe of his lung. So then, that day was pretty much the same as the last with keeping him comfortable and sedated, but they told us that the next step would be to schedule a CT angiogram and get a long-term picc line in place at the same time. He was taken in today at about 1pm for both procedures and it didn't take long for those also. The hard part was waiting for the results of the CT. This is where it gets complicated..
We were told that the scan did give them the information that they were looking for. What they saw was that the artery that leads from his left lung to the heart was extrmemely long, narrow and blocked. From this information, their next step is to do a heart catheter to get even more data on how to fix it. Since the problematic area is almost impossible to fix, if they cannot figure out how to repair it during the cath, a few more options will have to be thrown on the table. Three considerations are to remove part of that lung that is affected, remove that whole lung, or even a whole lung transplant. Family and friends keep asking us what we need and how we are feeling. We're almost speechless and don't know what to think anymore. All we can ask for is prayers. Pray that maybe they can figure out a way to fix this with a minimally invasive procedure. Pray that the doctors can make the almost impossible, possible. Pray that Isaac stays strong throught this whole matter. Pray that whatever doctors decide to do, is the right choice. Pray for the family and friends that we hold dear to our hearts. Pray for our family's faith and strength, and most of all please pray that we are able to keep the faith. God Bless you all and I will keep updating as I get more information.

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No Significant News

No new news, but also no bad news yet. We waited all day to see the ENT (ear, nose, and throat) doctor and he finally just showed up. He came in and stuck a camera scope through his nose. He found nothing considerable in his nose or throat that was actively or could have caused the bleeding. At this point, his cardiologist aren't too worried anymore unless it happens again. They are telling us that they are just being watchful of him right now. The combination of blood thinners was likely most of the cause of so much bleeding, but still don't know where it came from. I guess as long as it doesn't happen again, it really shouldn't bother us too much. I trust the doctors here...they know what they're doing. Otherwise, Isaac is doing wonderfully...playing, giggling, smiling. He is such a liar right?

Update after Procedure

Isaac is out of his procedure and we are waiting to see him in a few minutes. What the GI doctors found really couldn't determine that the fresh blood came from his stomach. They found a few scratches inside his stomach but the doctor didn't think the bleeding came from them. Now we're back to the guessing game. I'll update with anything else that we find out. Thanks everyone.


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Back to Houston

We are once again back in Houston. It all started on Friday morning after we got back from Black Friday Christmas shopping. We were so excited...this being Isaac's first Christmas and our first Christmas all together. Not that we haven't been together for Christmas, but there was always doubt somewhere in the back of my mind. As much faith as someone can have, who wouldn't have that doubt. So anyways, we got back and Isaac's medicine and breakfast was due when we heard him trying to cough something out on his baby monitor. He kept coughing and coughing like he couldn't clear what was there. So Ernest went to go pick him up, brought him over to where we were and patted his back to help him get the stuff out. We thought that maybe it was just some bad congestion built up while he was sleeping, but when he started coughing it up, it came out red. Oh my gosh....we've never been that scared in our lives. It took me a matter of seconds to grab the phone and call 911 and of course you feel like they take forever to get there, but in reality it probably took them about 2 minutes max. So they took him to Midland Memorial where they asked us a series of questions, drew blood, gave him a breathing treatment, and stuck him for an IV. The doctor is telling us that it could be a number of things causing it, but otherwise he is stable and comfortable. He wasn't crying too much..only when they were poking him. At this point we have already been calling the doctors at Texas Children's trying to let them know and we already know that we are headed to Houston again. I immediately headed home to start packing, and within a matter of a couple of hours, we were headed out the door. Ernest left on the jet with him at almost the same time we left by car. Ernest got to Houston an hour and a half later and we finally got there at 8 pm. There were still no answers when we got there, but they did have an idea that the blood probably came from an ulcer in his stomach. He was put straight into a private room with only a pulse ox monitor. After that episode, he seemed happy and was his normal self for most of the time. So, what they said was that they were not 100% sure but that a combination of his two blood thinners (Lovenox and aspirin) caused ulcers in his stomach that started actively bleeding. The only way to check him for active bleeding was for them to do an endoscopy. Since he seemed to be doing fine, the doctors didn't want to put him in any risk with an endoscopy so we were going to be released some time today. So this morning after getting his blood drawn for morning labs, he started coughing. I got up to pat his back and lean him to the side and he started coughing up blood again. This time it didn't seem to be as much but they ordered for them to also get a syringe and see if he had any blood in his stomach through his g-tube. The nurse got some sterile water, pumped it in and pulled it back out slowly and pulled back a lot of fresh blood. This all happened while doctors were doing their morning rounds, so they were just around the hallway. They checked his vitals, checked his heart, and other than him aspirating a little, he was fine. The cardiologist had a talk with the GI doctors and want him scheduled for an endoscopy as soon as possible. He was put on standby but written in for today so here we are. We are hoping that this test will confirm that the bleeding is coming from his stomach and no where else. If they do find bleeding in his stomach, the doctors will go ahead and repair it, but if they find that it is an infection or something else medicine can handle, than they won't do any further intervention and start him on medications. If it is not blood coming from his stomach, then it could be coming somewhere from his ears, mouth, throat, etc, but we are hoping it is his stomach. Please pray that they find the cause and can fix it pretty quickly.
With all of this happening, Isaac is still in good spirits and playing as much as he can. I think we'll go and buy him a "get well soon" balloon that he can knock around after he gets out. He'll have something else to play with besides his mickey mouse beanie that he loves so much. Its so cute to watch him wrestle it sometimes. Most of the time, just putting mickey's ears next to his mouth will make him fall asleep faster. I never thought one of my kids would have a security item. Needless to say, we've stocked up with 2 more mickey mouse replacements. ;-) I'll update once he is out. We may not have any news on what it is yet, but at least he'll be out of anesthesia. God Bless all of you who think of him often. We love all of you.


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