His pulmonary hypertension is worse. Overnight the cardiologist came in and has been with him and they started giving him medicine to sedate him every 3 hours. They are planning on getting him on a constant drip (sedation) now. If he does not improve or gets worse, they will start talking about the need to give him medicine to temporarily paralyze him. His oxygen saturation has dropped to 70%. They are going to do what's called "minimal stimulation". They have ear muffs on his ears and have now closed the top of his isolette to drown out as much noise as possible. They said we are still somewhat allowed to touch him but it can only be a firm hand on him, no rubbing. They are hoping these measures will help his body relax and aid the hypertension. Brian is going to give him a blessing before it gets to the point where we aren't allowed to touch him.
7:15 AM
The day doctors are getting ready to come on so there's lots of busyness right now. I just spoke with one of the neonatalogists and she said they will meet with all the other doctors to get on the same page. They are going to start preparing him to be heavier sedated then they will put in another IV line. They they will paralyze him so they can do all the work for him so his body can relax better and recover better. It's one more step to get the body to relax to help his hypertension go down. He is still breathing on his own really well, it's all about his hypertension now and his lungs. Since he's not able to progress more on his own they will take over and help him progress with the machines then slowly take him off after time to let his body adjust and take over again after the right progress has been made. She said it's probably a combination of his heart defect as well contributing, not sure after this what's next if it doesn't work? Everyone's just doing one step at a time. She said they want him to be able to do more on his own before his surgery so they might push it back? It's a very slow wean off of everything so it will take time.
9:20 AM
Brian gave Eli a priesthood blessing this morning. He was having a lot of hiccups and was very fidgety and agitated. His stats dropped a lot. Brian put his hands on his head and chest and he calmed down almost immediately. His hiccups went away and his oxygen saturation went up to the mid 80s. He still seems very peaceful. His saturation numbers have gotten a little better the last little while, but they're still not where they need to be even on 100% oxygen. I thought it was going to be soon they would sedate him more but I think the doctors still need to meet and do rounds first. They are also discussing as a team whether or not they should paralyze him. They just put a blanket over his incubator to block light, but we can still look in if we want. They are doing everything they can to help his body relax.
10:27 AM
It sounds like they are not going to do paralyzation yet because his last blood gas looked really good and his stats are holding ok right now with just more pain meds to relax him better.
11:08 AM
Dr. Hoyer came in to talk to us... Eli's right upper lung chamber has collapsed which could be contributing to his unstable stats. He said there are simple things they can do to get it up and going again even just as simple as moving him onto his other side or palpitating the area. I guess it's not a huge concern in the immediate? But will work on it...May need to adjust his breathing tube as well.
We also spoke with Dr. Rodenfield, the surgeon who will be doing Eli's Arterial Switch procedure. He just stopped by to introduce himself. They tentatively have his surgery scheduled for this Friday depending on how stable he remains. He reviewed Eli's case this morning. If they want to give him more time it will probably be Tues or Wed of next week.
For the most part they are really trying to keep things as quiet and calm for Eli as they can. He has the ear muffs on and his isolette top closed and a blanket over the top. Even when the doctors come in they speak very quietly. His stats have been steady so no alarms going off recently.
In 30 minutes they are going to do another x-ray to see if his lung has reinflated, because his stats have been going up, they think it may have. They said his surgery on Friday would take maybe 6 hours. Afterwards we would move to a different building to the pediatric ICU for a couple of days at least.
5:48 PM
Eli's oxygen saturation has been dropping again. Good news is they say it has nothing to do with his lungs. They said he has great lungs and is going great on ventilator. They have continued him on the sedation and pain meds and are also giving him calcium to help with his heart. They are going to give him a blood transfusion in a little bit. They are hoping the additional red blood cells will help with oxygen and also the additional "fluid" from the blood will hopefully help with the pressure in his lungs. The nurse is also going to give him an antibiotic as a precaution in case he is septic. We are physically and emotionally exhausted listening to his alarms go off all the time and watching his numbers go up and down.
6:23 PM
Neonatalogist said with babies they do "packed red blood cells". This isn't the type of transfusion where they put new blood in and take his out or anything...essentially it's just "added fluids" they are only giving him 2 oz. and he is responding great!
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