This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Thursday, March 29, 2012

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!

Saturday, March 24, 2012

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! ;)

Wednesday, March 21, 2012

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!! ;)

Sunday, March 18, 2012

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.

Friday, March 16, 2012

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.

Sunday, March 11, 2012

03/02/12 Admission--Update #2

It is nearly midnight but I am trying my best to keep things updated for those that are keeping up Lydon. We have not gained any ground with his tube feedings. We've not even been able to make it up to half of our regular rate and that's just Pedialyte not his usual formula. His stomach just keeps putting out more than what we are able to put in. So, we are obviously still on the TPN (Total Parental Nutrition). TPN is basically total nutrition that is infused through his central line. We are trying very hard to make progress with the tube feedings. We are going back and forth with turning the Pedialyte off and on and turning the rate up and down. We do NOT want to go home on TPN. TPN is very hard on your liver and Lydon's liver enzymes have been climbing steadily over the last year anyway. Hopefully things turn around with this issue really really soon! Our GI doc is trying to arrange things with one of the GI docs at Texas Childrens to get Lydon in to do a manometry test. This would tell us what Lydon GI issues stem from whether it be gastric emptying, intestinal motility or nerve issues. I wish this would happen sooner than later but it will probably be at least a month before we get in. As far as the trachea infection goes, Lydon seems to be doing well airway wise. However, his culture did grow Psuedomonas. YUCK!! As if that wasnt enough, it also started growing Staph just two nights ago. So, we are definitely staying here on IV antibiotics for that issue alone for another 4-5 days. We enjoyed a lot of visitors this weekend. It definitely helped break up the long days. I will try to update again tomorrow after we talk to all of the docs again.

Thursday, March 8, 2012

A quick hospital update

We were finally able to get Lydon extubated late Tuesday. YAY!!! He did well. He did have some of his usual stridor but did a great job breathing on his own with just some supplemental O2. His culture from his trachea produced gram positive rods. We are still waiting to see if an isolated bug grows out of it. We are treating him regardless with IV antibiotics for the next 7-10 days. We've tried to start his feeds back but everytime we give anything through his g or j tube he cries and ends up vomiting. So the decision was made today to start TPN. We are going to start pedialyte through his j tube at the same time along with a gastric emptying med in hopes of being off the TPN very quickly. Hopefully his tummy will remember what it is suppose to do and quit being so lazy!! That's about it for now... Lydon is still feeling pretty crummy. Doing a lot of laying around and not yet strong enough to get out bed or even sit up and play. Time and patience we have plenty of at this point. We are just happy to see Lydon breathing on his own and blinking those beautiful blue eyes at us. :-)

Tuesday, March 6, 2012

What's going on?

Where do i begin? First, I will tell you that we are in PICU on a ventilator and have been since Saturday. Lydon is being treated right now for possible tracheitis with IV antibiotics but we hope we can get him off the vent later today. Now, for what brought us here...basically, sometime last week we started noticing that Lydon was acting like his tube was bothering him. He was a real grouch all week. Then on Thursday, he really gave the nurse a hard time about connecting the extension to give his meds. That evening after his night feeds were running, his pump kept going off. Then on Friday morning, he complained again that his tube hurt and when I checked for placement of his j tube, I got back stomach contents. So,sadly, up to the ER we went. We waited for several hours but we finally got to xray and sure enough the tube was not just sitting in his stomach but actually coiled upwards. So we got in a room and started making plans to replace it. Our big concern as always was his airway and of late our access issues or lack there of. So we went down around noon on Saturday and felt very lucky to greeted by a very wonderful and understanding surgeon and anesthesiologist. They gave us much reassurance and peace and told us they should be done in about an hour. Three hours later, our awesome surgeon come out shaking her head at us. She had to position and place his tube four times before she could get it down in position where it would stay. During the process, he required 40% more anesthesia than he had previously. Then while they were sure he was totally under anesthesia, he turned his head, coughed, and spit out the intubation tube!! Anesthesia said it was very difficult to even bag him and they were afraid he was so swollen that they may not even be able to get another tube back in. SCARE-REEEEY!! Thankfully they did and all was well back up in the PICU. Later that evening, they started trying to wean him from the vent but we just werent able to do so. Everytime we made progress, he would beome acidotic and need the extra help again. We finally decided it would be best for ENT to go back to the OR to take a look and reevaluate his airway. We did that and eveything looked pretty normal. The doctor felt that his issues were more neuromuscular and not so much structural. We will continue to follow and investigate this issue. As of this moment, Lydon is still requiring the ventilator but we are working hard to wean him off today. Furtherqmore,since they encountered so much trouble in the OR, there is talk of possibly changing out his gj tube for a straight g and straight j and placing some more permanent access in the near future. For now, we are hoping for a good day with lots of progress! :)

Saturday, March 3, 2012


Quick update Lydons j tube has migrated back into his tummy. Weve been here since yesterday trying to figure out a plan. We at this point have not been able to get access. The plan is to put in a line and then replace his tube sometime this morning. Hopefully that will happen. We are of course exhausted but hoping and praying for the best.