Not Much Improvement

There unfortunately is not much improvement to report. The plus side is all of Elias discomfort and issues are explainable and to some degree validated. It is just very difficult to watch him suffering like he is. Particularly, when we are so accustomed to seeing him bounce back so quickly.

The easiest way to describe the issues is that Elias has a lot of retained gas at the moment. It is filling up the empty space as shown on his x-ray, but is beginning to also put compressed pressure on his organs. This is causing additional discomfort. The incision and surgical site is not seeming to bother him. We are continuing the every 4 hour valium around the clock to keep him as relaxed as possible.

This morning has been particularly rough for Elias. He has vomited several time already. Considering he has not eaten since Sunday morning one could imagine how particularly painful that has been. He has also been crying out more than normal, needing more frequent suction, and unaccepting of any physical contact. This includes loving contact. Can't say I blame him though.

The goals for today are to keep Elias as comfortable as we can and to hope he finally passes stool and some of that gas. Thank you all for your continued thoughts and prayers. We greatly appreciate it.


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Day 2 post surgery AM update

This morning Elias was still uncomfortable and in some obvious pain or discomfort still. This is the longest we have seen him take to bounce back from a surgery, but the adjustment in his body this time around is quite monumental. We have been giving him Valium every 4 hours and the occasional morphine dose. This is the only way we can get him to relax. Poor little man!

This morning we traveled to radiology for a series of x-rays. They typically wait until stool has passed, but that usually happens by now. So they just wanted to make sure everything was fine in the bowels. Elias has not had any food or nutrition now for 72 hours. We continue to wait for stool before the slow process of working him into his feeds begin.

We will keep everyone updated as things come up. We appreciate all the continued support and prayers.
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Recovery Process

Elias is still uncomfortable and in a touch of pain from the surgery. We have not given any morphine since this morning. Valium has been the life saver today. He has napped and rested well and often through the day. The urinary catheter was removed late morning and that has helped tremendously to decrease some of his discomfort.

The surgeon came in early this afternoon to check on him. He was pleased with how his stomach looked (no swelling) and with Elias overall appearance. At this point we are just waiting for gas, stool, and/or both to pass. At that time they will evaluate when to begin his feeding. He commented again on the small and tight connection from the colostomy closure and his concern over proceeding too fast and causing damage.

Elias has given some smiles but generally just wants to be left alone right now. We can't blame him. He is on 3 different antibiotics too on top of not having eaten anything since 1030am Sunday morning. All in all though recovery is progressing nicely albeit slow going. Thank you all for your continued thoughts and prayers of support.
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No More Colostomy

Surgical update #2. Elias is in some pain and discomfort. He is getting morphine every 2 hours. The colostomy reversal went well, said the surgeon, but his bowel is very tiny. What does that mean? It means they are going to be more conservative with how quickly they resume feeds after he begins passing gas and stool through the rectum. The concern is that the point where the colostomy was attached to the rest of the bowel could open or not heal correctly if they try to press getting feeds flowing. This will keep us inpatient about another week possibly more. We are hoping that Elias will do as he always does and recovers quickly. Tonight there is also a urinary catheter in place which is causing him just as much discomfort. He has been asleep most of the evening only waking long enough to grimace in pain, cry a little and the morphine knocks him back out. Rest well and long little man you deserve it. The hourly bowel cleansings pre-op last night ended up literally going until 5 am, do 10 consecutive hours, so Elias got very little sleep last night. So he has even more reason to be exhausted. We are not positive but it seems like the catheter will come out tomorrow, that is our hope too. For now it is just sit wait for gas and stool and heal. That is the plan and being stuck in that crib is going to drive Elias NUTS! We will update tomorrow on the developments and improvements. Thank you all again for your continued thoughts and prayers. Everyone’s support is greatly appreciated. 

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Surgery update #1

Elias has been in surgery since about 1130am. The colostomy reversal portion. Which is the longest segment is last and being done now. Pulmonary and ENT did bronchoscopies and urology did a cystostogram with urethreal dilation.

Those three are complete now. The airway team said that not much has changed and they had hoped to see some improvement, but haven't. Elias airway is still very flat, small, tenuous, and at risk. They are still scratching their heads trying to figure out how this child is breathing as well as he is. We will accept the gift that he is giving and continue with caution as we have been. So that is positive despite no physical change. What we really need, and the emphasized this again today is for Elias to grow! Damn FA and its growth issues! It will make our GI appointment next week interesting.

We will update again when Elias is out of surgery and we know more about his colostomy reversal.
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The Term “Planned” Admission Used Loosely

Well this day pretty much went as expected, a crazy chaotic mess. We were told to admit Elias this morning at 10 am for pre-surgical prep. It took until six this evening for any orders to be put in the system for the nurses to do anything, so we sat there and no one could do anything or tell us anything. Why were we there so early if they were not going to start anything or even put orders in? The sad part is we had spoken with the colorectal nurse coordinator just a few weeks ago and rehashed the insanity and unprofessionalism that surrounded our surgery by the same team in June. She assured us that would not happen this time. Well she was wrong. Sadly the events in June were so bad and unorganized that the patient advocates office became involved. They sent us a letter outlining their review of the situation and that they would take action to improve this area. They too were wrong. Anyway, enough about that and we hope it truly ends with just today being a cluster…..

Elias is in good spirits tonight despite going through hourly bowel cleansings since seven this evening. This consists of placing a Foley catheter in the colostomy stoma and flushing saline in and drawing it out once an hour until the return is clear. Hopefully it will only take 3 or 4 times. He also has not had any food since 10:30 this morning and will likely not be fed again for another 24 hours or so. Still he is being an amazing little man, laughing and smiling.

An update on the Central line issue we informed everyone about last night….The CVC team examined the line and determined there was a weak area that needed to be repaired. This was a relatively simple procedure and done at the bedside. They cut the line beyond the weak point and fed another wire through and glued it together. That was a sigh of relief for them to be able to fix it. Though it was simple it is not without risk and much be watched closely to ensure nothing made its way into the line to contaminate it during the repair. We did have some issues and it took 3 repair kits with us literally covering his open line with a sterile gauze pad for close to 10 minutes while we waited for another kit to arrive. He appears fine and it has been used for labs and seems to be functioning well. We are very relieved that stress is removed.

We will post updates through the day tomorrow to update on Elias progress and recovery with his surgery. We are not certain as of now exactly what time he will be going in the Operating Room. Please keep him in your prayers the next few days, we greatly appreciate it.

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• Elias' Central Line

Elias’ Central Line

Tonight while doing our daily flushing of Elias central line we noticed a small bulge in the line. It is tiny, smaller than a pea, but at first we thought there was air in the line, which is VERY BAD! We scrubbed and placed a saline filled syringe back on the cap to draw back to check for air or clots. The bulge stayed the same size and the blood return was normal and consistent. That was promising. We contacted the Bone Marrow Doctor on call at the hospital to discuss this concern and see if we needed to get Elias into the ER or if it could wait. He will be admitted tomorrow for surgery prep with the colostomy reversal (and the rest of the surgical party) on Monday. The BMT doctor was fine with us waiting until we check in tomorrow and have it assessed then. This does tend to happen when there are weak points in the line. This will need to be repaired and hopefully they can or that could be bad news. Elias venous access is still very poor. So this line is critical for surgery, meds and IVIG. We feel better after having discussed it with the doctor, but we are still hoping that it will not postpone the surgery or that the line will have to be pulled. We will keep everyone posted on this development as well as Elias progress and recovery. We are not certain what time Elias will go into surgery on Monday, but as soon as we have any details and are able to share we will. Thank you in advance for all your thoughts and prayers.