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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Happy Halloween

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Quick Trip to Houston

So, for those that didn't know...we decided to take a quick weekend vacation to Houston!!! Hahaha...not really...its really not something to laugh about but a regular pediatric appointment turned from getting admitted into the local hospital to getting airlifted to Houston. We had already known that Isaac was sick with a probable virus and I guess we got him to his doctor in time before he could've gotten worse. It all started the day that we came back from Houston for his monthly checkup (which went great with no changes by the way)and I started running fever and having aches all over. We finally got home and I was finally able to get some rest thinking that it was probably another one of my chronic sinus infections. I kept the fever at bay with Tylenol and Ibuprofen for the night and next day, but when Ernest woke up feeling awful the next day also, he made a doc appointment for both of us. I went first, got tested for the flu and it came out positive. I went home terrified and told Ernest we needed to call his pediatrician, his transplant coordinator, and his heart transplant doctors to ask what measures to take. So, Ernest went and was flu positive, and so he also asked about bringing in Eli. They told him that they'd test him and if he was fine, that they'd go ahead and administer the flu shot. ...turned out he had the flu also. All of us were put on Tamiflu with lots of rest and fluids. My mom was thankfully able to help out with most of Isaac's care to lessen any exposure to the flu. That night, Isaac started not wanting to sleep through the night with coughing and a low grade fever. We thought of one of our worst fears...he has the flu. Many calls were made to Houston and it was decided that we should just take him to the minor ER to do a whole fever workup on him. We didn't have to wait too long for the results, but he came out negative for flu, but the doctor said it was probably a minor virus and gave us antibiotics to prevent viral pneumonia. When we finally went home, we took all necessary precautions to keep Isaac from getting the flu, so we wore plenty of gloves, masks, and had to lessen the contact with Isaac. Well, last Wednesday night, he coughs sounded more congested and we were getting worried that his cold was not subsiding. I was glad that he was scheduled for his bi-weekly appointment with his pediatrician here. I woke up bright and early the next morning and had Isaac at his appointment at 8:30. His doctor checked him out, listened to his heart, and tested him for the flu. After asking me a few more questions, he looked at the test strip and said "he is flu A postive with a possible ear infection." I told him, "so okay, where do we go from here?" He tells me that if it was his son in the same situation, he would call his primary doctors and let them know, but in the meantime get him admitted into the hospital. It wasn't because of the flu, but because he had the flu with a bacterial infection on top of it. Isaac didn't look even all that bad..it was just the congested cough that scared us all. So after he gave me the papers to get him admitted, we headed to the hospital and called Dad to tell him the news and get him to call his Houston doctors. Isaac was admitted, undressed, hospital-gowned, poked for an IV, and then got a breathing treatment and a dose of Tamiflu. During that time, Ernest had spoken with his doctors and found out that Isaac had to be airlifted to Texas children's. The Kangaroo Crew showed up at about 4pm and Isaac and I were driven to the airport. This is the plane that got us there.

Here was the Kangaroo Crew getting Isaac ready for transport


And here he was on a big man stretcher trying to look out the window.

So we got to the hospital at 5:30pm and the only room they could get him into was in the PICU. Doctors said that it was overkill but because there were no step down private rooms open, they still wanted him hooked up to monitors for precautionary measures. He stayed in the PICU overnight, had his regular meds plus Tamiflu (no sedatives...surprisingly) and got his well-needed rest. I waited for Ernest to get in and he finally got in at 12:30am. We said our good nights and gave him many kisses and headed off to get some rest at the apartment. We knew he was in good hands because all the nurses around him just wanted to play with him and make him smile. We came in the next morning to find him in a Step-down private room (much less critical). After the doctors rounded that day, they said they wanted to just keep him for observation overnight and that we would see where that took us for the next day. It was also said that he looked surprisingly well for having the flu. Becuase they've already seen too many cases of the H1n1, they were treating him as if he had it too. Any doctor or nurse that came in the room had to wear gloves, masks, and a sterile smock to protect all the other patients that they come in contact with. Really...you would've thought (by the looks) that he had Leprosy!!! So anyways, the next morning rounds, we were told that we were no longer needing to be in the hospital because it was probably more risk of him getting another virus. But...being the question-askers that we are, we asked the doctor if it was easier to get a swallow study done inpatient rather than outpatient. We had been trying to get him scheduled for two months now to no avail. So he said that if he could get one scheduled for Monday morning, that he would keep him there until then, but that if they couldn't they would talk about releasing us that day or the next. Later that day, we were finally told that he was scheduled for his swallow study on Monday morning...so we stayed until then. Its a little difficult to keep our sanity together while being locked up in an isolation room with nothing to do but watch TV or eat. We were thankful to have Tia Sylvia there to keep us company for the weekend. It was also great to have some friends visit us while we were there. So finally Monday came along and Isaac had his swallow study done. He passed with flying colors and is now able to take any liquids by mouth. Isaac is now eating 4 ozs of baby food per day (quite a bit), and we have tried a few times to get him to take a bottle. He doesn't take to it too well...we may just have to go straight to a sippy cup. We don't want to force it on him because then he'll only remember eating as something bad. He was finally released on Tuesday morning but we weren't actually discharged unitl about 1pm. so, we weren't able to leave town until 2pm. We left the hospital very excited but with heavy hearts because we had also just found out that a heart child (whose parents we spoke to) had passed away a few weeks ago. I'm not too sure of the major details of how but we did know that she was very sick. She was admitted about the same time Isaac was born because she was Post Heart Transplant and she was sick. They found out that she had contracted a virus that scarred her heart and to top it all off, she was also in rejection. Rejection is an almost normal think to go through after transplant, but having a virus that killed some cells of her heart was what was making her sick. She was in ICU for testing for the whole time that we were there also and her parents were told that she would have to have a retransplant. But...she couldn't be listed until all infection was gone. It seemed that she just kept getting sicker and sicker and so they finally said that a Berlin Heart was the only option to bridge her to retransplant. She was able to get her Berlin about a month before Isaac recieved his heart and seemed to be doing well. Ernest and I had spoken with her parents many times and they were very nice folks. I can only imagaine what they are going through at this time. The reason I bring this up is because I'd like my friends and family to keep this family in their prayers. This little girl's strength and power were unforgettable to all of us. Please pray that God with bring them comfort and strenth during this time of bereavement. Thank you all for listening and God Bless!




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A Quick Trip

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HOME SWEET HOME!!!!

Nothing feels better than being at home. Although most of our time has been spent unpacking and cleaning, it has been wonderful! Our journey back home was a long and tedious one. The trip was going by pretty fast until a downpour caught us right before getting to Ozona. We had our van and a rented pickup truck packed (no tarp!), so my recliner and a few boxes got soaked! I was infuriated..but not for long! I think God apologized...about an hour before getting home we saw a beautiful full rainbow and another half one right next to it. I was able to take a few pictures, but the second rainbow didn't come out too dark.




There was also a beautiful sunset that welcomed us home!


Isaac is still doing very well...thankfully he hasn't caught any other bugs since we've been home. He had his first appointment with his pediatrician here and his drug levels still have to be checked every two weeks for awhile. We have been set up with ECI to continue working on physical therapy, occupational therapy, and speech. Today was his first evaluation and then we need to set up his evaluation with each therapist to see what he needs as far as any type of therapy. We are also still continually working on his feeding (mostly baby food). Because he has not had his swallow study done yet, we are still hesitant to try bottles on him. We have though, don't get me wrong. His formula has to be thickened (pretty thick) so it is even harder for him to try to suck, swallow, and breath. He hasn't completely learned how to roll over on his own either...I think it'll take a little more time. He also does not do too much cooing yet...unless he accidentally surprises himself. We've been trying so hard to make him start laughing too. I've heard him a few times...its a short laugh..but so cute! We'll get there! People have to understand that because he was intubated for so long that it is almost like he is 4 months old rather than almost 7 months old. Our next trip to Houston is on October 8th. Since transplant clinics are on Thursdays, we have to leave on Wenesday...looong trip. We also have to figure out a way to get the rest of our stuff back home. So nothing much else except for loving the home environment. We are home, both kids are here, and the weather is wonderful. I've grown to really love the coolness and will not ever take it for granted. Bye for now and thank you everyone again for your constant thoughts and prayers.





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Happy Labor Day

And what a Happy Labor Day it is.....the day before we go back home to Midland. We had been released since this past Thursday but more drug levels had to be checked this past Sunday. Not much else has changed with Isaac except that he's growing and being a cute baby. We're all packed and ready to go...so excited that I couldn't remember what else I was gonna post. Just wanted to let everyone know that we have finally been released and are headed for home tomorrow (Tuesday 9-8-09). What a day to remember...the first time Isaac will see his real home!!! God Bless all that pray for us and especially Isaac. We wouldn't be where we are now if it wasn't for the family and friends that have supported us throughout this journey. Please stay tuned and watch for other pictures and updates (although probably not so often as I had done before)...Again, hope everyone had a great Labor Day...I know we did...even though most was spent packing up.

We also wanted to share some pictures of when we took the kids to Galveston. We only stayed for a few hours but those few hours were worth it. How come no one told us that the beaches were so gorgeous there. We even found a native hermit crab. Ernest wanted to kill it to take its pretty shell...Barbaric huh? Just to let you know, I did let him go back into his ocean.






Here is Isaac working on his trunk control before we left for Galveston.







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6 Months Old

Isaac turned 6 months old yesterday. ....he's growing up so fast! Everything had been going pretty steady with Isaac until he caught a stomach bug. We thought that maybe somehow he had come in contact with it from one of us, but we found out that he was one of the luckies that caught it during one of his clinic visits. It turned out that someone may have had it and a lot of the heart kids came in contact with it. So, we had a fun two weeks of diarrhea and vomiting. We thought it would never end. Thankfully, we never really had to get him admitted for dehydration but we did have to go very frequently to get his blood levels checked and that was bad enough. We also had to be aware that he COULD get dehydrated very easily.

Yesterday, he also scared us half to death because his g-tube came completely out of his stomach. Now, we couldn't really remember the process of what we should do if that was to happen but it was in the back of our minds. Thankfully, we did the right thing by calling his nurses and taking him in right away. We were told that if we wait longer than an hour, that the hole could end up closing up. Whew!!! We had him there within thirty minutes so they were able to put his g-tube in pretty quickly. I'll know what to do next time (which hopefully there won't be).

The only other update is that we could even be coming back home a little sooner than we had expected. Isaac's doctor (on one of our last recent clinic visits) had said that his goal was to get us out of Houston by mid-September. Well, at his clinic yesterday, we were told that after they schedule him for another swallow study (to see what thickness of liquids are safe by mouth for him) and get his drug levels at normal, then we will be released. We're not counting our chickens yet, but that could be as soon as next weekend, but for sure closer to two weeks if not earlier. We're so excited but trying not to think about it.

In between all the commotion of going back and forth to the hospital, we were finally able to take the boys to get some professional pictures taken. Hope you enjoy them and some of our homemade pictures too.










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Can't Wait....

For what you say…..to pack up and go home! We are all so very homesick and Houston just makes it all worse. There is NOTHING to do here, unless of course you love upscale shopping …everyday. But anyways, enough about that and more about Isaac right?
We had a pretty eventful week last week. Isaac was finally weaned completely off of the Ativan and Methadone, Around the beginning of last week, Isaac started throwing up almost half of is feeds for almost a whole day. It was really scaring me, so we finally called our Transplant nurse coordinator. Because she was afraid that he was not keeping his medicines down, we were ordered to take him in to the emergency room. What a day that was! Two restless kiddos and two grumpy, sleep deprived parents in a small ER room was not a good combination. Until, we figured out ..a few hours later that (by George) there was a tv in there. All we had to do was turn on Spongebob and Eli was taken care of ….for about another hour. So, back to Isaac….labs were drawn, x-rays were taken, and echo was done. This was all done very quickly when we got there but what took hours of waiting were all the results and getting his doctor to come talk to us. After waiting for 5 hours, his doctor finally came in to tell us the results. He said that his bloodwork looked great, his x-rays were clear, his echo was also normal, and the nasal wash (checking for viruses and flu) came out negative, but there was only one thing concerning him. His blood work showed that his white blood cells were on the low side. This could mean a lot and could also mean that Isaac could have picked up a weak virus. There was no way to really know. He did also say that one of his immunosuppressants (Cellcept) could be doing its job a little too well. So, Isaac is now taking 3 less medications…Yay!!! Of course, we’ll never really know what went on that day with him, but at least something good came out from taking him to the ER. Because he was taken off of an immunosuppressant, we’ve been having to take him in quite a few times to get his other drug levels checked. This week will be another series of visits also. His next regular, weekly clinic appointment is this Thursday, and our nurse told us that maybe we could talk about getting them down to bi-weekly. Now THAT would be nice to hear! No definite word yet on the exact date of coming home, but the three months post transplant is on September 6th and its getting closer…
Other than the little scare he gave us, we’ve also been working with him on feeding by mouth and on his physical therapy. He still gags when anything besides his fingers is in his mouth. If you haven’t noticed by his pictures, he loves his hands in his mouth!!! His physical therapy is also coming along really well. He can now move his head from side to side on his own and his neck muscles are becoming stronger every day. He can almost keep his head up on his own when sitting down. He is continuing to learn how to bat at his toys on his own but it does take awhile to get him to pull his arms from the side of his head. He is still accustomed to the restraints they had on him in ICU. He is five months old and about 1 or 2 months behind on his development. We’ll get there!!! He’s got his whole life to go!
Since Eli was such a great sport at putting up with being at the hospital again, we decided we’d treat him out this weekend. Of course like I said before, it was hard trying to find something to do with an almost 4 year old. We’ve done the zoo and the children’s museum and in all honesty it has been too hot to repeat them. We finally decided on trying a place called ITZ, and it was well worth it. We all had fun!!! He even got to take his best friend, Bryan. The majority of our day was spent there eating, playing games, and riding rides. All indoors….that was the best part! I would highly recommend this place to anyone of any age. It was like a mini indoor themepark! The best part was the biggest and best ride that they had in there..it was called the Disk-o. It scared the s*** out of me, but I did get on it more than once.
I can see that if I don’t stop now, I’ll end up rambling so I’ll stop here and just share some of the pictures of the last few weeks.

If you are wondering where Isaac was this whole time.....he was sound asleep (most of the time) in his stroller away from the germs!




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