Most Recent Update-(with pictures)

Over the past two months, Lydon and our family have been through a very challenging and life changing experience. As many of you know, Lydon endured multiple challenges and hospitalizations, which I have tried to chronicle in detail on this blog. However, the well known saying is that "sometimes a picture is worth a thousand words." So, I would like to share with you this time in our life through our family's eyes.

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Sad but True

Yes, we are here again! We've been home exactly one week and are already back. I hate it!! Makes me mad, sad, frustrated, aggrevated, and tired! On Monday evening, I had bathed Lydon (its kinda funny to see an almost three year old in the kitchen sink but it works better to keep the dressing dry on his PICC line), dressed him, given his meds and hooked up a Ferrall bag which helps drain his tummy and keep him from being so distended and uncomfortable. We were all in the boys room at the time... I was dressing Ly and cleaning his GJ site, Jono was getting Aidan ready for bed and Hollie was standing there observing us all. I stood him up to pull up his pants and out came the tube with the balloon intact! We all revolted with a loud "Ooooh NO"!!! Poor babies....Lydon and Aidan both started crying, and then the sadest part...My sweet Lydon started apologizing with his tiny little voice and pouty lips, "I saw-wee Mommy". Of course, I grabbed him and hugged him and told him it was ok and wasnt his fault. Sissy took over while I went and grabbed a G-button from our travel bag and put back in so we could hold the stoma open over night. This was probably the one moment in time where I was thankful for our TPN because it saved us having to run to the ER. With Lydon's current GI and metabolic issues, we would've had to immediately go in because he cant handle enough milk in his stomach to nourish and adequately hydrate him. So, all was well after that. Everyone slept and we went in to our GI appointment the next morning. I met with the GI docs in clinic and literally begged them to let us increase our TPN rate and stay home until we could get on the IR schedule to change out the tube. I did not win. ;( They felt it was best for Lydon to be inpatient and try to get the tube fixed that way. They gave me admission orders and after I took our nurse home, we headed back up here. I was so sad to be coming back but thankful that at least we didnt have to go through the ER. As of this moment, I have not heard from GI. The pedi team tells me that they are working with IR to try and see if they can get a non balloon GJ tube and will insert that tomorrow morning as opposed to the same type of GJ which is held in place by an inflatable balloon. Please pray that this will work out...that we can get this new tube without general anesthesia and be heading back home tomorrow afternoon. We are pleading with the team to get this done and get us out of here before Friday. This is not where we want to spend Easter weekend. Thanks for the prayers, love and concern.

Update 9, 10...the end!

Yes, "the end" of this hospital stay! Hopefully this will be the last one for a very long time! We finally made it home late Monday night. We had a great team of people who worked really hard to get us home and spare us even just one more nights stay at the Herm. Thank you Paw Paw, Poppy, and Daddy who stayed up till after midnight to get a second refrigerator set up for the large supply of meds and fluids that are needed each day. We are thrilled to finally be back home but we are both unbelievably exhausted!! Its a tight tedious schedule around the clock with all the meds and fluids but we are getting it done. We both slept until almost 11 this morning. We are slowly getting things back in order. Thankfully, we have a few wonderful friends and family memebers who have offered and brought dinner the last couple nights. We have labs to draw and a dressing change tomorrow, plus a couple of follow up appointments early next week. Oh, and we've cancelled Lydons heart cath that was scheduled next week. He needs some more time to get past all of this. Slow and steady... but we'll make it!

Update 8

Well, sure am glad i didnt hold my breath for a Friday discharge because we are still here! I didnt have much faith in everything being pulled together by then. Nevertheless, things are looking pretty promising for Monday. We are still on a significant amount of TPN but we were able to drop it down to 18 hours a day instead of 24 so that gives us some wiggle room during the day for him to not be connected to that and have a little more freedom. We are still crossing our fingers and praying that things will still turnaround GI wise and this whole TPN issue ia still very short lived. Regardless, we are anxious to be home and get back in to a "normal" routine whatever that is! ;)

Update 7: A busy day!

Yes, we are still here! I'll try to condense the last few days as much possible without leaving out too many details. Last Sunday, Lydon was looking better. Our team acted very quickly in contacting Dr.P who ordered the antibiotics and other meds to get Lydons fever down and keep him comfortable. So by Sunday, he had already had meds on board for 24 hours. Monday was a pretty quiet day. We made some progress with his J-tube feeds so that was encouraging. By Tuesday though his labs weren't looking so hot. His white count was way too low and his cultures were still positive even though we had increased his dose of the Vancomycin more than once. He was Neutropenic meaning that he didnt have enough white blood cells in his body to fight infection or bacteria. Yuck! This meant that everybody had to wear gowns and masks in order to protect him from getting anything else. We also got the sensitivity to the bug that was growing from his central line and decided to switch his antibiotics. Later that afternoon, his central line stopped flusing and giving back blood. Yuck, Yuck! Nobody was happy about this but we all agreed it was best to pull the line. I was so nervous and afraid that this would send us back to PICU but I was wrong and so happy I was. The procedure was able to be done in Interventional Radiology with conscious sedation and no intubation. He was very very sleepy from all the drugs and we had to spend a couple of hours in the recovery room but we avoided the PICU so that was just fine with us. I was so happy that he seemed to be doing so good in recovery that it was a while after we had been sitting waiting for him to wake up when I realized they had put in a single lumen PICC line instead of a double. I was so upset and felt like a big fat failure for not making sure that everyone involved knew the specifics. Having a single lumen line means that we have to disconnect TPN and lipids and break the sterility of the line everytime we give one of his antibiotics instead of having one line for the TPN and one for everything else. He had a double lumen central line when he went in so I just assumed (stupid me!) that the line would be replaced with a double lumen. Anyway, whats done is done and there certainly wasn't anything that could be done about it at that point. This line will get us by for now and we skated past PICU right up to our regular room so I figured I can't complain too much. Well, that wasn't until about an hour after we got to our room and Ly's pump started alarming. I went over to look at it to see what the problem was when I saw that his whole bag of lipids was empty! His lipids are infused over 18 hours and it was full when they restarted it in the recovery room. I panicked for a minute but we quickly checked his blood sugar and started running some extra fluids. Luckily, lipids are basically just a bag of fatty acids so there isn't anything in the bag to throw him off metabolically. We joked that he got a McDonalds value meal supersized! ;) We checked his triglycerides this evening and they were nearly triple what they had been but we are still running extra fluids so he should be ok. As of tonight, we havent made any progress with his feeds. There is a rumor that if we have a negative blood culture today and tomorrow and no fever in the mean time, we may possibly be able to go home Friday! I'm not holding my breath but man that sounds good! It will be busy with managing all of the fluids and med schedules but we all want our boy home! I'm terrible about posting pictures when I'm here, but I will try to post some tomorrow. My sweet family has pulled together a memory foam pad for the window seat where I am sleeping, a mask to block out the light and ear plugs for all of the noise....Lets hope for a peaceful, restful night. I'm anxious to try it out!! ;)

3/2/12 Admission-Update 5/6

So obviously i am updating every two to three days. I wish i could update every day but sometimes it just isnt possible. Regardless, heres the latest. Friday after Lydons testing was done, we took him down to IR for them to replace his feeding tube. It was horrible for him and us (like bang your head in the wall and cry with him) but it only took a few minutes and we got it back in without any anesthesia. In our world, that is success! After that, luckily all went smoothly and we were transferred back to Hermann. All was well, Friday night and Saturday for the most part. Let me stop here and say how greatful,thankfull, and appreciative we are to all of Lydons grandparents. Mimi and Grandbuddy, Paw Paw and Grandmommy, and Nanny and Poppy have ALL pitched in and helped us immensely but this weekend they made it possible for me to me home Friday and Saturday night. It was so nice to eat some decent food and sleep in my own bed. Anyway, Saturday afternoon, they started running some of Lydons milk back thru his feeding tube. He seemd to be doing great, even pretending to be a lil monkey and hanging on the crib! ;) But shortly there after, he started running fever. They gave him Motrin but within a couple of hours, it was steadily climbing to nearly 103. The team called our Immunologist and they decided to get blood and urine cultures and preemptively start antibiotics. Not fun!! :((
So, what we know now is that Lydon has an infection im his blood. We think it is probably from the central line itself but we wont know for sure for another day or so. The good news is we started the antibiotics really quickly and today, his fever has already started trending downward. We also got the results of the manometry from TCH. His stomach muscles and intestinal motility is not that bad. Our problem is his nerves. The signals are not doing their job adequately in telling his stomach and intestines what to do. So, this causes his poor GI function. He did respond to one medication but it can only be given by injection or iv. We are working on getting this med on board and figuring out the best way to give it. We hope this makes a big difference. Otherwise, aat least some amount of TPN seems inevitable. I am trying to wrap my brain around how we adjust our lives to this major change. Schedules will have to be adjusted, labs drawn and results checked...heck, my refrigerator will have to be rearranged, that alone is major! TPN comes in big bags with smaller bags of vitamins and supplements that have to be mixed. Each complete bag cost approx 1,000 and you receive tpn for a week and it must be kept refrigerated. At $7,000 a pop, I dont think our semi cool fridge in the garage is gonna cut it! Lots and lots to think about. For now, we are stuck here at least another 5-7 days until we can get the infection cleared and get his port placed.

3/2/12 Admissio-Update 3/4

Sorry i didnt get to update as soon as I wouldve liked. Its been a busy few days. Over the last several days, weve tried extremely hard to get Lydon GI system to accept the tube feeds but he has not cooperated. Basically whatever we put in his j tube is coming out his g tube. His output is often more than what goes in.
Lots of calls and arrangements were made and ultimately we were transferred to Texas Childrens hospital to have a special test done on his GI system called manometry. Today we will go down to Interventional Radiilogy and they try to place the probe thru his intestines. Tomorrow (Friday), they will perform the test which takes approx 8 hours with NO sedation. God help us! After the test, they will replace his feeding tube (it had to be removed so the probe could be placed) and we will be transferred back to Hermann for a couple more days. We are glad we are getting this done but we are so tired of being in patient. Being on TPN is not what we want but being home is and we are willing to make that happen regardless of what we have to do in order to achieve that. If that means going home on TPN, then so be it. We are really praying for some answers...the ambulance ride itself was traumatic enough to say nothing of the 14 days weve already been in patient. Please bind with us in prayer and belief that this testing will lend us the information we need to know how to best take care of and move forward with Lydons GI issues.