The last few days have been back and forth in terms of progress. On Wednesday they attempted to pass the NJ tube and had to settle for the OJ tube which we were not pleased with because we knew what was going to happen, and it did. It came out Thursday night. it did last longer than we expected, but we thought we were seeing a positive sign pointing away from reflux aspirations. It appears that the NJ tube migrated or flipped itself in the stomach at some point Thursday afternoon. Elias began his usual retching which we were not expecting to see with the Jejunal feeds, but would in the "cycle". So while we thought we moved forward with that answer we realized we had not gained that ground. They tried to replace it at the bedside, but were unsuccessful. So they had to give Elias an IV that took about an hour and a half and several nurses to get started. Friday afternoon he went back to the OR to place another NJ tube. At this time it is still in. We will be doing a PH study now beginning on Tuesday and lasting for 24 hours. They are prepping his stomach by eliminating his prevacid for five days. This should determine objectively if the reflux is a serious enough issue to require the Nissen surgery or a G/J tube.
Elias is still slightly dependant on oxygen. We had been arguing with the PICU doctors about the fact that Elias is getting O2 flow while hooked up to the oxygen line regardless that the gauge says that the flow is at 21%, which is room air. When they initial tried to switch Elias over to the "medical air" line which is pure air no O2 flow he began to Desat. When they switched him back to the Oxygen line his SATs stabilized. Our pulmonologist agreed with us after watch Elias on two separate occasions and not liking what she saw or explain this behavior. She asked the respiratory team for hook up an analyzer since the O2 flow dial is uncalibrated. It showed that it was providing Elias with 32% oxygen!! Score another point for us, but honestly it should have not come to that. Today they have hooked up a more accurate way to measure and ensure they know the exact amount of oxygen Elias is receiving. They have weaned him from 32% to 25% today, but he is only SATing 95%, his baseline at home is 99-100%, 95% is still an acceptable blood oxygen saturation level clinically, but on the border of being accepted.
On Tuesday Elias took the last course of his 12 days worth of steroids. On Wednesday and Thursday as we have seen him cycle in the past two months after they are completed he began to present his normal symptoms. We were able to predict almost to the hour what his next behavior would be. His secretions were very thick and large in volume compared to the day before. They began yet another course of Prelone steroids, his fifth course now in 8 weeks. We really were not pleased with that decision because these are immune system inhibiting. With a roommate being treated for RSV and half the PICU with this virus we were not really looking to increase his chances of contracting this. They also began another nebulizer medication that the name escapes me at the moment, I think I am just too tired. Friday morning his secretions were beautiful. He was not as congested as normal, we rarely had to suction and Elias was looking much better and more himself. This was great except for we were back to square one with figuring out why. Was it the fact that he was back on the steroids for 36 hours, was it the new nebulizer med, or was it the fact that Elias was not being fed only getting IV fluids. So this weekend we are starting over with the baseline observation with the feeds past the stomach. This will be interesting to see if the pattern cycle continues.
After 8 weeks of this chronic cyclic illness it is beginning to be frustrating to see Elias and worse off predict how bad he is going to feel. We are so ready to get this mystery solved and move forward with him feeling better. The first 6 weeks we were able to manage and work on it outpatient, but now it is just progressing faster that we can meet on an outpatient basis which is why we are in the hospital. Well, also because each time we cycle through and start over it gets gradually worse. That is the pulmonologist concern, that he will end up with a pneumonia or worse. In the mean time will Elias contract something else while in the hospital? We know it will eventually be resolved and that we should be patient, but seeing Elias over and over feeling the way he does and not being able to prevent it is difficult as a parent. It is also frustrating to try and sort out all the factors since we are working with so many variables and not being able to control them enough to get accurate studies and results. The blue stain test has still yielded nothing in the trach, which is positive. We will do a modified barium swallow (MBS test sometime next week as well. Beyond that if we still have no answers then we will have to work Elias up to an acceptable baseline and continue what we are doing outpatient and hope that the progression of worsening symptoms do not beat us to the finish line and put us in the hospital again for something more serious.
With what we know and the test that are still pending we have at least 5 more days, until Wednesday at the earliest that we would be discharged. The PH test will begin Monday night or Tuesday morning, then the MBS test and of course hoping that Elias is weaned off the oxygen, which he should be by then. I will say that we are thankful that it has taken so long for us to have a longer term hospital stay. We have done a successful job managing him from home, but this is something that is just taking too long to control and it progresses rather than get better or even plateau. Elias is miserable and it is something that effects him and his desire to be his wonderful cheerful self. Katharine and I continue to take shifts at the hospital so that one of us is there around the clock with him. It is beginning to become very exhausting and stressful, constantly watching and keeping track of everything. We unfortunately feel the need, not as good parents, but because of practicality. Tonight, for example, Elias is getting Albuterol every 2 hours. He was due for a treatment, which is administered by the respiratory team, at 6p which just so happens to be around the shift change and report time. No one came and with things going on it was close to 8p when I realized he had gone since 4p without any of his respiratory medicines. Him getting these maintenance meds timely is the difference between managing and back tracking. I should not have to track down the respiratory personnel to remind them my son needs treatment. When the therapist came in for the 8p I asked why Elias was missing a dose at 6p. She told me that the day therapist got behind and that several patients treatments were not administered, but it was not signed off in the computer as given. That matters to me why again? I did not push any further with the therapist only because I am turning into a grumpy old man who is lacking enough sleep, but not lacking good judgement. I will take this up with higher authority, but that is an example of why we are killing ourselves to be there around the clock. We are waiting until this hospitalization and issue is resolved and we plan to address the level of care or lack there of he gets from the support medical team (nurses, respiratory, etc.). We are in the intermediate care unit, but it makes me wonder what the "standard" unit care is like. Oh well no since crying over spilled milk. The bottom line is Elias is still not doing well and we are ready to get him home again and if us being there around the clock makes it faster then so be it. With us there along with his specialist Elias gets the care he needs and deserves, it just takes some pushing sometimes and that is just outside of our characters, but easy to assume when it comes to our son.