Trials Off Si Pap Start Today

Elias got a nice bath this morning and he seemed to enjoy it for the most part. His nurse had him disconnected from the Si Pap while he had his bath. He tolerated those few minutes beautifully. So she asked the doctors if we could try him on the collar (for humidity only, no pressures or oxygen). They approved and are going to give him a 30 minute trial later today. It truly is amazing how much the tracheostomy helped him. We are feeling a little better about our decision on this. After his bath they weighed him as well. He has lost some weight, he is back under 6 lbs (5 lbs 9 oz). He had weighed as much as 6 lbs 5 oz, early last week. Not 100% sure why he lost the weight. She weighed him on two scales to be certain. It is possible the diuretic he is on for fluid retention could be contributing and this is a more accurate weight. Although it looked as though his edema had subsided physically, his urine output had decreased dramatically. Putting him on the diuretic helped immediately so it's possible he was still retaining fluids without looking "puffy."

Overall, Elias seems to be doing wonderfully. He was giving a lot of smiles yesterday and resting comfortably in between cares. He is becoming more active and alert. Physical Therapy came in yesterday for a session. She worked on stretching his muscles, primarily legs, arms, and hands. She also gave him a massage which he apparently really enjoyed!! Occupational Therapy is suppose to come in today and make a new left hand splint. If you remember he was becoming quite the escape artist. They will also start working with him soon on neck muscle control, sitting up, and when he is able tummy time. They will also work on teaching him to nipple even though he will not be fed through a bottle, at least for now. All of this will continue even after he comes home. We will update you later on how Elias did on his trial.

Calling All Questions!!

Elias is still doing well and on the Si Pap. There was a little concern that he may get tired since he was breathing on his own, but he was really taken a liking to it. His blood gasses and vitals still are beautiful and you can tell he is feeling better now. They are beginning to ween the morphine now that he has turned the corner with the fentanyl withdrawal. Dr. Stuart came by and looked at the G-tube sight and said that he was not concerned with all the leaking, that it would be fine. Coming from him, we are happy with that. As we mentioned yesterday he wants to do another dilation and change the trach tube next week. He is leaving this in longer than normal mainly because Elias is so small and they already are using the smallest tube. He warned us on the onset he would drag his feet on the initial change, so this is not too much of a surprise.

Thursday is our family meeting, at 8:00 am. As with last time we are preparing a list of questions to ask the medical teams. We would like your input as well. Please call us, email, or leave a comment if you can think of anything. As we said last time, there are so many things going through our heads that we might overlook something that could be worth looking in to. Even if it is something you would like to know yourself about Elias, we would be happy to ask. We certainly appreciate your input and suggestions, at anytime, but even more so now. Thank you all in advance. We can finally see the finish line, it is still pretty far off in the distance, but at least the road looks to be straight and narrow.

Here is the GREAT News!

We must begin this update with a little disclaimer:

The news you are about to hear is in no way concrete, set in stone, or any other analogy you can think up. It is necessary to remember the NICU motto..."3 steps forward, 2 steps back." Only Elias & God can control the actual outcome, so while excitement is warranted and deserved, it must be done slightly, with the air of caution. No animals were hurt during this update and singing Bohemian Rhapsody (Wayne's World Style) by Queen twice daily might be enough fun to prevent a heart attack. OK, now we are just being Goofy, Katharine's favorite Disney Character. Oh yeah and Whup (Johnny) Long Hospital Stays & Troy!! (I know a few of you will get that) OK, can you tell we are giddy and have not had enough sleep in the last 3 months!! Let's get on with the news already!!!!!!!!

With that out of the way, we are happy to announce that we have our first real time line for Elias to come home. All the time lines before were purely speculative, but if everything holds it's course, with nothing to set us back (see disclaimer), then this time line is very realistic.

Here is how they hope it works:

1. Elias will go in next Wednesday, August 6th for another esophagus dilation. They will also change the trach tube and remove the sutures.
2. Elias is now on full time Si Pap, and if he can last they will work on taking him off the Si Pap for trials to transition to the Trach collar.
3. They are going to do bolus feeds (all at one time as if in a bottle) every three hours during the day, and continuous feeds overnight.
4. Once the trach tube is changed we, the parents, have to begin to learn to suction and change his trach tube. It will need to be done once a week and whenever it should fall out.
5. We both have to demonstrate proficiency individually to the staff (oh no! not a test!) and ensure we are comfortable performing both tasks.
6. Elias gets to come HOME!!

This was incredible news and much needed relief. So, with the time line above, we are looking at....

4-6 weeks (isn't it always that way though hahaha?). Basically, its 2 weeks for the dilation, 1 week for the feeds and 1-2 weeks for mom and dad to get it right!! Of course we want everyone to read the disclaimer again at the top of this update. We want no surprises!! So everyone put on their POSITIVE THOUGHT CAPS and let's make this "dream [that] is a wish [y]our heart makes" come true!!

Mobile Update: Great News

Elias is still on Si Pap. Doing very well with it & the doctors are
pleased & impressed. We also got some other great news, it has to wait
until we get home to share.

--
Sent from Gmail for mobile | mobile.google.com

"All the adversity I've had in my life, all my troubles and obstacles,
have strengthened me... "
-Walter Elias Disney

Special Photos

We are happy to bring you pictures of Elias without ANY tubes or tape on his face. This was only temporary though until they replaced the NG tube, but we thought we might as well take the opportunity while we had it. Enjoy!!

Breaking News

Just got off the phone with Elias' nurse. They have decided to leave him on Si Pap indefinitely because he has been performing so well!

What a huge step forward, more like a giant leap. Way to go Elias!!

Better Day For Elias

Elias seems to have turned the corner in terms of his withdrawal. He had some periods of long rest yesterday. We are beginning to hear him cry around the leak in his tube. I bet you've never heard any parents say a baby's cry is music to our ears. Admittidly we were stunned and concerned the first time we heard it, and the nurses were too so that made it more concerning. One thing we have all forgotten is that Elias is much smaller than they normally like to trach, therefore they used the smallest tube possible rather than slowly weening down. So the leak is natural and earlier than you find in most trached babies. He will be able to make sounds, but not really talk. His cry was loud, but still softer than we think he is capable, and very sustained. When we left him last night he was sleeping very soundly.

They had replaced his OG tube with an NG (nose) tube early yesterday morning, but that came out around 2:30pm. Surgery said they would be in around 8 pm to replace again. The nurse was waiting to do his cares in conjunction with Ped Surgery's visit so he could get less disturbance. When they had not come up she paged them to inquire a time for the procedure. They informed her they would not be doing it until the next day. What!!! Michael was a little upset at this point and asked to speak to the resident of the NICU. His G-tube had been leaking more than normal again and we were waiting until they came up to show them. They had to refill the balloon twice the night before, this is not normal. When the resident came in I explained how I wanted to go through the proper channels to express our discontent about them not replacing the NG tube. Note this was a Sunday and the last time Ped Surgery dropped the ball was when Elias' feeding tube came out the first weekend he was in isolation, another Sunday!! I explained how I understood that this was not a feeding tube anymore, but Dr. Stuart made it very clear after the surgery he needed that to keep his access open to the esophagus. He told the nurse to tape it well and guard it with your life. Apparently, this doctor, who has taken wonderful care of Elias, felt it necessary to leave this in for good reason. The resident told me he would contact them and request a reason, as well as let them know about the G-Tube. When he returned he told us that the chief surgeon gave the order to hold off NG replacement in Elias because he had replaced it himself and it was difficult. This is quite the contrary from what we were told about the procedure. We were told it went in easily...hmmmm, it's Sunday, I'm thinking repeat here. I told the resident for the record I was not pleased with this decision and hoped there would be no complications due to the length of wait time. He told us they assured him it would not close up. Again experience tells us otherwise...DOESN'T ANYONE READ HIS FREAKING CHART!! As for the G-tube again we were not pleased with the recommendation. They said to stop his feeds and begin IV fluids and they would review it during rounds in the morning. WHAT!!! Even Elias nurse objected strongly to this recommendation. Elias is not the easiest to stick for IVs and they generally do not last even when you get one in. So this was certainly not a good option and for what? Again to wait until the morning rounds to address the situation. Our point was we have been pointing it out and saying hey this doesn't seem right for a week now. They finally came up and re-inflated the balloon on Saturday night (twice in 8 hours) but now it warrants completely stopping his feeds, without even coming to look at it? This will certainly be brought up at the Family Meeting on Thursday. It is too the point I dread the weekends because that is when we seem to have the most issue. Sorry for the rant again, but common sense is not lining up with medical practice right now.

Withdrawal & Si-Pap Trials

Last night was another late night at the NICU. Elias has just really had a terrible time with getting comfortable. He is so up and down, one minute he is doing well and comfy then the next he is agitated. It is very frustrating as a parent to not be able to sooth your child, but magnified when when you are limited in resources and ability to touch and calm your child. His nurses strongly feel he is experiencing withdrawal from the fentanyl. They just had to cut him off too quick because of the lack of IV access. In a few days it will improve and we know that, but as Katharine has said before, "there is a place where logic and emotion do not mix." This is another one of those examples. He has been spitting up the last few days, which is a side effect that could be contributed by the withdrawal. It has mostly just been secretions, no milk, until last night where he threw up breast milk for the first time. So far it has been isolated, but we are watching it closely. His OG tube came out overnight (which only used as a stint), so it is possible, however unlikely, that caused it as it worked it's way up. It could be the reflux we have been worried about, again not likely since this was isolated to one time so far and he has had several days of feeds. But, we are again in a position where multiple factors could be the candidate for culprit, but since they are all happening together it is harder to isolate the true problem. We are beginning to notice this happens a lot. It is not any ones fault, nor are we trying to place blame. We are not criticising the care, but there just comes a point where you want a clear answer, not a foggy one.

Now that the venting is out of the way....other things happened overnight as well. They came in and re-inflated the balloon in the G-tube with saline. The balloon seals the opening, since it was deflating there were more secretions coming out. It got to the point where milk was coming out if the sides. Once they re-inflated the balloon it returned to a normal or level of leakage.

Now for some positive news!!

We mentioned yesterday the chance they might try Elias on Si-Pap. They did move forward with this. They are doing trials with him in intervals. Yesterday they did two trials of one hour each. Remember that Si-Pap delivers only pressures to the lung, but does not give breaths for him. Elias has to do the work. He did wonderful and his blood gases came back beautiful after both trials. Even better than when he is on the vent! Such a huge step forward for him! Today they are repeating the trials increasing them to 2 hours each. He is on it now and performing very well. His heart rate looks good, respiratory rate is stable & constant, and his blood oxygen levels are at 100%. This is wonderful news and finally a giant leap forward rather than the baby steps. We are so proud of him and can not wait to get him home.

Rough Two Days

Thank you all again for being so patient after we got you all excited Thursday night about the media. As we told you it was an extremely late night Thursday as things went a little south after the update. Yesterday was not much better. After our very late night we returned early Friday to the hospital. Elias was resting, but not particularly comfortable. He was moving around a lot and fussing. The nurses think it is some withdrawal from the fentanyl. He started spitting up the same frothy saliva that is leaking out of his G-tube late morning and into the afternoon. He did it four or five times while we were there. We think he might be gagging on the OG tube going down to stint the esophagus open. Now that he is off the steady sedation of the fentanyl he is probably noticing it more. He is getting morphine every 3 hours, but that wears off after time. They were weening him off the morphine, but his nurse last night recommended they wait a few more days before going down anymore. Part of the plan for sometime in the next few weeks is to remove the OG and replace it through the nose or even better the silk suture if possible. We are against the wall a little with this because he needs the tube to hold the stricture open, but him gagging and spitting up makes the stricture potentially worse. We hope they choose to do the dilation and replacement of OG sooner rather than later. For now Elias is just going to be a little fitful and fussy for a few more days unfortunately.

There is a little rumour going around that they might try Elias on Si-Pap today. It would be a huge step forward if he can sustain on that instead of the vent. It would be easier to ween off the pressures of the Si-Pap and could be machine free quicker. We can all say a little prayer for success here.

Finally, we have another family meeting with the medical team on Thursday at 8 am. We are hoping for some productive planning and consensus on what we need to do to get Elias home. We are also going to voice our negative opinions about him being sent to another hospital for transition. It is much more convenient and closer for us to stay where we are, if it is at all possible. Some of his nurses think it might be and have encouraged us to let them know how we feel. We hope everyone enjoyed the photos & video. Thanks again for all your support, you have know idea how much it has helped us through this very difficult time.

Finally - The Video July 24, 2008

Thanks for being patient...update on Elias will be up soon as well.

Photos from Thursday

• Video is formatting as we speak. Will have it uploaded and posted in 10-15 minutes, with an update to follow.

Very Late Night

Elias continued to stay awake for awhile after our update last night, but actually turned a little fussy when we noticed the G-tube sight was leaking a mucus type substance, thicker than the normal secretions, and at a much heavier volume. It was like a Dam had broken. The doctors came in to check it out, but could not explain it because of course by the time they got to Elias it had returned to his normal secretions. At least the nurses saw it too, so they no we are not crazy. Dr. Stuart came to check it out this morning and he didn't have an answer either as to why, but assured us there is no cause for worry. With all of that we did not get home until well after midnight. We are headed back up to the hospital now so I will get the photos and video up tonight, sorry about that! We called up a few minutes ago to the NICU and Elias is resting comfortably and doing well.

Mobile Update - Doing Well

He is really wide awake. Been this way almost all day. We were able to get some photos & video. May not be able to post until tomorrow evening, as it looks to be a wonderfully late night. We plan to stay until Elias falls asleep. He is not showing signs of slowing down! Way to go Elias!

13 week mark

We have now entered our 13th week in the NICU. It seems like an eternity in some respects, while it seems like yesterday that he was born. Non the less, we are just thankful our little man is braving it all so well.

As for Elias, he is having a fitful morning. He has been a bit fussy so far. Last night he was very comfortable and sleeping through our visit. The IV access in his head stopped working earlier. They originally wanted to stop the fentanyl and switch over to morphine, which they can give through his G-tube. Since they haven't been able to ween the fentanyl more they still need to continue with it, so another IV was needed. It took several nurses to finally get one that worked. That of course did not make Elias very happy this morning. The goal for his feeds today is to get it bumped to full volume for him, 22 mls. Everything with that seems to continue on a good track, so we are keeping our fingers crossed.

We have requested another Family Meeting for the end of next week. We just want to be able to go over the new plan and try to figure out when we can get our boy home. We are hoping today or tomorrow Elias will be feeling well enough to get a few more photos and maybe some video for everyone to see. That is all for now, we will see what the rest of today holds in store for us.

Morning Update & Orthopedic Consult

No real changes overnight. The Ped Surgery team came in this morning and worked a little with Elias' G-tube. He has a leak around the site, which is fairly normal in the beginning, so there has not been too much concern. They are just attempting to adjust it to ensure it heals properly in place. They also removed the IV from the left side of his head and replaced it on the right side. Elias is very difficult to find veins for IV access, so they usually have to go in his head. By doing this they have been able to reposition him to his left side and he seems much more comfortable.

Rewinding Just A Bit

With all that was going on last week we did not really get into what happened with Elias' ortho consult. They finally came in on Thursday morning of all mornings. It was the hand surgeon and his resident team. He obviously had no idea what he was walking into with Elias doing so poorly. His nurse did not want to ask them to leave because she knew we had been waiting for so long for them to finally come. She told him that he could be brief in looking at him, but that now was not an appropriate time. He was actually starting to teach his residents. Elias' nurse spoke up and asked him not to teach, to please evaluate him quickly so they could finish working on him. He was unstable and it was very evident. It was certainly a time that this doctor should have used a little discretion about proceeding. The ortho team found us in the family waiting room. They introduced themselves, and without thinking I blurted out, " You guys sure picked a hell of a day to show up!" I'm not really sure if my inflection came off as being distracted, upset, or just a complete smart-ass. However, I was assured by several of the nurses that all three would certainly have been appropriate. They explained to us that Elias is missing his radial bone in both his arms. OK, we knew that much, but we humored them. He continued to explain that it was really too early to consider surgical options at this time. We told him that we understood that, but the purpose of the consult was per occupational therapy's request for validation on how and what to splint, as to not hinder potential success when it is time for surgery. He relayed to us that he is not a fan of splinting and that nothing OT would do was going to help or hinder the process. OK, great thank you for your time, you obviously did not understand the reason you were called out to see him. After discussion and follow-up with OT (with their complete dismay by the response) and the NICU doctors, the ortho report was very vague. So they are initiating a dialogue to possibly coerce a slightly more lucid response. Sometimes, doctor to doctor conversations can yield better results than doctor to patient. To be completely honest, this has us very glad that Elias will not need any surgery for this right away. We are having serious doubts about wanting to use these orthopedic doctors, based on the visit and lack of response. Thankfully they are part of another hospital and not the one we are currently staying. At the very least we will want to seek another opinion, which will probably involve some traveling. Elias getting the best care is what is important to us and that is the bottom line. As for splinting, we are going to continue once Elias is stable again. We, along with OT, feel as though they have been beneficial, if for no other reason than increased range of motion.

New, But Minor Development

Elias has continued to have a good day. He has had periods of activity and rest. After reviewing the x-ray from this morning, the doctors have seen an improvement in the pneumonia. There is however, a small collapse in the upper lobe of Elias' right lung. This is fairly common in patients with pneumonia and no cause for great concern, just watchful waiting. They are keeping the pressures on his vent higher to help combat the collapse. I would think if it were truly bothering Elias, he would not have been as active today, so that is a great sign.

They are also continuing to increase his feeds 2 mls every 12 hours. He is currently at 12 mls per hour. His baseline prior to surgery was 16 mls per hour. So far there doesn't seem to be any reflux issue, so the prevacid seems to be doing the job.

Continued Improvement

Elias is having another good day. He is almost back to his baseline condition...Thank God!! They have got him on room air again for his oxygen levels and a rate of 28 on the vent (the rate is how many breaths each minute the vent will give). He is breathing over the vent most of the time in the 40's, but he does seem to let the vent do the work when he is in the deep part of his sleep. This morning when he woke up he was ready to play. It took us all [mom, dad, nurse, & social worker] to figure out he wasn't being fussy or agitated, he simply was bored and wanted some playtime!! How wonderful. He has been very happy to move around again, and boy is he doing just that. Those arms and legs are just kicking and swinging, he is having a good old time. He has also learned to knock off his vent connection. He thinks its funny because he smiles almost every time he does it. Yup, he is a character and God knows we love it!! We asked about the pneumonia and its progression in terms of healing. They have not seen the latest x-rays from this morning yet, but clinically he is showing good improvement. This certainly is helping us sleep much better at night.

Dr. Stuart, Elias' Pediatric Surgeon came by today to look at everything. He said it all looked good and was healing nicely. He told us that he wants to get the OG tube out of his mouth and move it either to NG (through the nose) or place just a silk suture line to help keep the path in the esophagus available. He also wants to do another dilation. He has not decided how soon, but it will probably be in the next 2 weeks. A lot depends on the G-tube healing, because he would like to put a scope in to check placement while they have Elias in the OR. They are trying to group procedures together to minimize risks with anesthesia and complications.

More Photos From Yesterday

Glad Everyone Enjoyed The Photo

While yesterday's photo certainly told the story of how Elias seems to be doing, it brought on a major sigh of relief from us. Overnight there were not many changes. They did decrease his fentanyl slightly and this morning gave him Ativan because he was slightly uncomfortable. He quickly went back to sleep after that. They are going to continue the Ativan PRN (as needed) to help him be more comfortable, but Elias will probably only need it once or twice a day...he is such a tough little man! They also started him on prevacid, a reflux medication. They are gradually increasing his feed volume through the g-tube, still with pedialyte, but they want to make sure as the volume increases his reflux doesn't get the better of him. They have not said yet when they will switch to breast milk. Ped Surgery rounded on him this morning and said the surgical sites are looking well. Today will probably be focused on increasing the feed volumes and more rest.
We are just thankful that the worst from this has passed with the positive results we are seeing. As I said in Saturday's post, Elias continues to amaze us. He is so strong, as well as having a lot of character, but as we watch him through the suffering and pain he is the one that pulls us through. Again, Katharine & I can not express our gratitude enough to all of you for your thoughts, prayers, calls, & emails. It certainly helped us to be as strong as Elias. Thankfully it is on with another day, each day stronger and one day closer to home.

Picture Worth A Thousand Words

Taken Today @ 3:35 pm (he was "sleeping" by the way)

Think he is getting better???

What an amazing little fighter!!

more photos from today will be posted later.