Another long drop in the NICU rollercoaster: Day 119-129

I want to start this post by saying thank you to everyone that sent their loving thoughts and prayers to our beautiful son over the past few days.  Benton gave us quite the scare this past week and we continue to hope and pray that he continues to get better with each passing minute.

 Last week, once Benton got diagnosed with pneumonia his oxygen requirement skyrocketed and he started to need a lot more ventilator pressures.  All the strides that Benton had made since his steroid treatment were lost and in fact we were losing ground to his infection.  Within a few days Benton was back to requiring 100% oxygen again and his ventilator pressures creeped up from 24 to 28 to 30 to 32 to 35.  Each day we would call the hospital and get less and less good news...first he was needing 80% oxygen then 100% oxygen (but still satting well) then 100% oxygen but not satting well. It all came to a terrifying pinnacle on Wednesday March 12th.  I had just dropped off my Dad and sister at the airport and was headed back to the house to work when I heard from the hospital that he still wasn't satting well despite 100% oxygen and ventilator pressures of 35.  I could hear the nervousness in the nurses voice so we dropped everything and headed to the hospital.

Once we arrived it seemed like within minutes Benton was extremely critical.  His oxygen saturations dropped down into the 70s and then the 60s despite being on 100% oxygen.  The doctors surrounded him as they tried everything to get him to start satting better again.  First they brought in the jet ventilator which allows them to bring his ventilatory pressures up past what the conventional ventilator can do.  With this change they increased his pressure up to 37 with a PEEP of 9.  This seemed to work for a brief second until the doctors tried to place an arterial line.  Then he started de-satting again in the 70s.  At this point the doctors brought in the nitric oxide.  Once the nitric was hooked up his oxygen saturations started getting better.  Thank the lord!

Resting after his terrifying ordeal

That evening we stayed at the hospital sitting vigil next to his bedside with him on full support.  It was heart-wrenching to see him requiring so many machines that we had thought we had said goodbye to.  His bedside was surrounded by a jet ventilator, nitric oxide and an IV tree with TPN, and various medications to keep him sedated.  We had come so far since our terrifying Christmas holiday, yet here we were back in the same place.  I couldn't help but cry and ask myself why this had happened.  Benton had been doing so well just one week before and now we were again terrified that we might lose him. 

Acting perky despite being on the jet ventilator

Since Benton was now not allowed to eat on the jet ventilator the doctors needed to place a new PICC line and this time they placed it in his head.  The good thing about the PICC line is that our sweet boy won't have to be poked and prodded so much to get IV after IV into his tiny veins.  Currently our sweet angel has a PICC line in his head, an arterial line in his left arm and a regular IV in his right arm.  To keep him from losing these lines they have had to restrain him and keep him drugged up on morphine and versad.  It is so hard to see my wonderful little boy hurting and straining against his restraints.

Since the scary day on Wednesday, Benton has slowly started to improve with the help of another steroid treatment.  The doctors decided that they would give Benton another shot at the steroids not only because he had reached 2.5 kilos but also because they hoped the steroids would help him get through this latest spell.  Over the past few days his oxygen requirement has come back down from 100% to 60% and now 55%.  His ventilator pressures have dropped from 37 to 35 to 33 to 31 to 29 to 27 to 25 to 24 to 22 to 21 now.  The doctors have taken him off the jet ventilator and now he doesn't need as many drugs to keep him calm.  In addition they have started to wean his nitric oxide from 20 to 16 and now to 14.  Benton has also started feedings again and is already back up to 6 ml/hour and today his feeds will be fortified to 24 calories.  We could not be more thrilled or proud of Benton's progress. 

Our little paddle boy with IVs in both arms and a PICC line.

We are hoping that Benton comes off the nitric oxide again soon, because this is still considered a lot of support and he can't make further steps forward in either getting extubated or having surgery until the nitric is gone.  Since everything has happened in the past week, the doctors have begun to prepare us for the likelihood that Benton will need a tracheostomy in order to stabilize his airway and help his chronic lung disease.  We are going to have a consult with the ENT specialists soon and it will be up to them regarding when to schedule the surgery.  We remain hopeful that Benton could be successfully extubated, but since he had such a huge setback this past week we are realistic that it may not be in the cards.  At the end of the day, all that matters is that our sweet boy can come home and that he can start to explore the world and be more comfortable.  By having a tracheostomy Benton will be able to start playing with toys and sticking his hands in his mouth, he will no longer have to be sedated so he can't pull out his tube and we will be able to start picking him up whenever we want to help comfort him.

Finally holding him again after almost one week

Please continue to keep our beautiful, brave boy in your thoughts and prayers.  Benton is such a fighter and we continue to pray for his lungs to get stronger with each passing day, that his pulmonary hypertension goes away and never rears its ugly head again and that he can remain healthy and not get anymore viruses or infections.  We love him so very much and cannot thank everyone enough for sending him love each and every day.

Feisty and awake before the pneumonia