Written Feb 24, 2012 1:18pm by Hillary SirmonBenjamin had a little bit of a rough night having to go up on his vent settings. Today they decreased his nitrous once again and he is tolerating it well. He is now receiving more milk with each feed and is digesting it without a problem. After occupational therapy, Benjamin was able to open one eye, but I think he was too swollen to open the other one. Hopefully in the next 24 hours, Benjamin will be completely off the nitrous and we can start weaning the vent. This has been such a slow process, but I honestly feel that it will start to speed up soon. Please continue with your prayers.
The Little Things
Written Feb 25, 2012 4:41pm by Hillary SirmonBenjamin had a peaceful night and was able to discontinue the use of the nitrous today. So far, he has tolerated it well, having to go up slightly on his oxygen. The doctor today started continuous feeds for Benjamin so that he will be able to receive more milk and gradually decrease the fluids through IV. More labs will be drawn for additional genetic tests.
When we arrived at the hospital today, Deacon Ted was visiting with Benjamin and stayed to pray with us. Next Benjamin had a visit from his cousin Susy, and he opened his eyes so brightly for her and his daddy. It’s the little things that continue to push us along.
A Moment I’ve Been Waiting For
Written Feb 25, 2012 6:55pm by Hillary SirmonBenjamin continued to maintain his sats without the nitrous today. He is to have one of his umbilical lines taken out tonight and the other will come out when the PICC line can be placed.
On my way into the NICU today, one of the respiratory therapists said she had a dream she was holidng Benjamin. The dream did not come to life for her, but it did for me. Fifteen minutes before we would have to leave for shift change, two nurses, a nurse practitioner, and a respiratory therapist smoothly transferred Benjamin into my arms while I sat in a rocker. Finally, a moment I have been waiting for, just to hold him. It was wonderful and Benjamin tolerated it well. The staff let us stay an extra fifteen minutes into shift change before transferring him back into his bed. I think this is something Benjamin and I both needed. We were finally able to take the picture of the moment you first hold your newborn. 🙂
Written Feb 26, 2012 12:45pm by Hillary SirmonBenjamin’s last few blood gases were not as good as we would like. They decided to do a chest x-ray due to poor lung sounds and the x-ray showed more atelectasis of the right lung. He will receive more aggressive therapy to his chest to help open up the lung.
On a good note, Benjamin is receiving more feeds and hopefully by tomorrow, he can be on strictly milk discontinuing the TPN. He lost a little weight last night due to decreased swelling, and he is tolerating all position changes well. He definitely looks better, but he continues to fight with his breathing and the vent. Until we have a definite diagnosis, KC and I continue to hope and pray that as soon as his lungs improve, so will Benjamin.
Needing Lots of Love and Prayers Today
Written Feb 27, 2012 11:23am by Hillary SirmonYesterday afternoon was a little rough for Benjamin. His lung x-ray showed no improvement in his collapsed right lung. He had alot of residual in his stomach with his feeds and when they filled his stomach with air to do a test, he spit up milk from mouth and nose. Lastly, his heart rate continued to remain high around 180-195 bpm.
Benjamin was able to go down on his oxygen over night and kept his eyes open for 1 1/2 hours around 2 am. They also checked his digestive system and saw no problems; therefore, they are continuing with his feeds. We were so hopeful everything was starting to go our way until I received a call from the pediatric surgeon. At 3 today, Benjamin will be put under anesthesia for a bronchoscope and to place a central line for vein access. The pediatric surgeon sounds pretty positive that Benjamin has a plug leading to his right lung that needs to be removed to allow the lung to open. If it is a plug, we should see immediate results. Please say an extra prayer for Benjamin today. Going under anesthesia is always scarey, but hopefully this will improve his lungs.
We Are Out of Surgery
Written Feb 27, 2012 5:11pm by Hillary SirmonDr. Adolph just came by to talk to us about Benjamin’s procedure. They removed a mucus plug from his right lung and he already has some improved breath sounds. They placed the central line, but with a possibility of having to reassess it because of some discoloration of the left arm. Benjamin remained stable throughout and we are now waiting on a chest x-ray.
From One Lung To Two 🙂
Written Feb 28, 2012 10:18am by Hillary SirmonBenjamin’s X-ray this morning looks so much clearer. He continues to have an elevated diaphragm on the right side, but he is able to use the right lung much more now. They have already lowered some of the settings on the vent, but it is such a slow process.
Benjamin’s color looks good and he appears to have less swelling. While we did his morning exercises, he tried to open his eyes slightly but for just a few seconds. We know this is going to be a long journey, but hopefully this is a good step in the right direction for weaning Benjamin off the vent.
Written Feb 29, 2012 9:35am by Hillary SirmonYesterday was a pretty good day for Benjamin. He tolerated the vent settings being able to go down some on the oxygen level. The nurse asked me if I wanted to hold Benjamin and I selflessly stepped aside (it was hard 🙂 ) and let KC have his chance to hold him. KC was beaming. Benjamin had a little trouble holding his O2 sats, but overall tolerated it well. They resumed his feeds and so far he hasn’t had any trouble with this. He has been able to respond more to handling, chest therapy, and blood draws, opening his eyes each time. I can’t bear to step away from him when his eyes are so bright. 🙂
And We Are Back To One
Written Feb 29, 2012 11:46am by Hillary SirmonBenjamin had a good night last night weaning down his oxygen to room air. We were so excited and hopeful until the chest X-ray this morning came back pretty disappointing. His right lung that had opened up with the bronchoscope is closing again. They are starting Benjamin on medications that will help loosen up the secretions making it easier to suction them out. Since, Benjamin is not really moving, and he can’t cough, his secretions appear to just be sitting and clogging up the tubes leading to the lung.
The picture attached is of Benjamin after his bath last night and after I fixed his hair. 🙂
Written Feb 29, 2012 11:58pm by Hillary SirmonBenjamin and I had a rough day today. He was able to maintain his Oxygen pretty well, but had multiple episodes where he looked as though he had trouble breathing, gasping for air. It was so difficult to watch. During shift change, I went downstairs, had a moment, and returned to see Benjamin resting comfortably. I was able to hold him once again, and didn’t want to let him go. I held him for two hours and KC was able to hold him for 30 minutes. This was the calmest he had been all day.
It is so hard waiting for a cause for all of this and no one knows quite what to say. All the physicians are very involved and curious. Some walk by, smile, look at Benjamin, and walk away. Some walk by, ask more questions about our families genetic history, and offer a few words of comfort before walking away. At this point, everyone knows Benjamin and most have either had dreams about him, work on treatment plans from home for him, or call and text to check on him while they are off of work. Benjamin already has all the ladies dreaming and calling about him. 🙂