Let’s start with yesterday. Beckett spent most of the day needing to be held. He did have a little time where he was content in his bouncy seat, but other than that he was either unhappy or held. Thankfully there are plenty of people around who love him and are willing to take a turn. They decided not to make any changes yesterday as he had had a difficult weekend. He did have PT, and when she tried to make him do tummy time, he let her know he was not going to have any part of that. He had started the morning on 49% oxygen but had worked up to 62% throughout the day. It is just so taxing when I sit and watch as he climbs higher and higher so quickly and then takes days to come back down again.
Yesterday my mom and I did have the privilege to have lunch with some very special friends form St. Vincent’s. It was such a gift to be able to go downtown and just be away from the hospital with friends and family. I was also really glad they were able to see Beckett and he was happy when they visited. He has gotten so big since they last saw him, and it is always fun to see people’s reactions to how much he has changed.
So yesterday was yet another day of spending quality time with my son in my arms, and having my mom there for the majority of the day. I am so grateful for her and for the break from constant holding and rocking. After all, I am human and my arms get tired. Plus we do crosswords and it almost always ends in hysterics, which is needed under the circumstances.
When you look at the big picture, yesterday was a decent day. Today however, was much more difficult. Beckett needed to have a new PICC line put in for two reasons. One, the line he had was old; he’s had it since February. Two, with the frequent blood draws they wanted a second lumen so they don’t have to poke him as much. I am on board with that! Since the septic workup from Sunday has come back negative so far, they felt comfortable going ahead with the procedure today. They were hoping to be able to insert a wire into the existing PICC, pull the old one out, and then thread a new one over the wire. This would allow Beckett to not be poked for a whole new one. So this morning we got him all ready and headed down to interventional radiology. The trip did not go so well. Beckett screamed and cried the entire way, and I could not get him to calm down. In fact, his mouth filled with so much saliva from crying that he was having a hard time breathing around it. He was sweating profusely and his color was draining from his body. Once down there I was going to pick him up to calm him, but I had to go to another room to sign consent. While I was sitting in the room, a nurse rushed out and said “they need help in 6”, the room I knew Beckett was in. Of course now my mind is going to all kinds of horrible places. Eventually an x-ray tech came in to ask me a few questions and I just had to ask if Beckett was ok. He said he was all right and that the nurse was holding him. He told me it was just taking a little while to calm him down. They let me back in the room and Beckett was sleeping on the nurse’s shoulder. He looked so limp, and he was completely flushed and pale. He looked pretty bad to be honest. They had turned up the flow on his VapoTherm to help him recover and his oxygen saturation was within range. They called the Nurse Practitioner down to determine what the next step should be. It was clear Beckett was not going to lie calmly on the table during the procedure, so they decided to give him some Ativan. They called upstairs and a nurse ran it down. When they went to give it, his scalp IV was no longer working. Ok, give it in the PICC line. Well then that didn’t flush very well, but they were able to get it in. Then they realized they could not do the procedure like planned because it would require disconnecting his IV drips for a period of time and that was not an option. That meant putting in a whole new one. So then I had to leave and sign consent for that. When I came back all of Beckett’s pumps were beeping and they couldn’t get them to run right. That meant they weren’t sure if his PICC was even working or if he was getting his IV drips. So they had to start a new IV. The nurse practitioner put an IV in his scalp, and thankfully got it on the first try. But, of course this made him really mad and the crying and sweating began all over again. He was so angry and looked pretty horrible. I was finally able to calm him with a combination of patting his butt and holding in his pacifier. They said it was a good sign that he had enough energy to suck on his paci. I couldn’t hold it in any longer and I began crying. The nurse realized I was struggling and asked if I felt we should continue (she had already informed me they were being very conservative with him and wouldn’t do anything they thought would be unsafe). I decided we had already gone through all this trouble, and I didn’t want to put him through it again so just do it while we are already here. The nurse agreed and then prayed with Beckett and me. It came time for me to leave, so I went upstairs to take care of a few things. As I headed back downstairs to wait, I was rounding a corner when I heard a baby crying. I instantly knew that was Beckett’s cry and turned back around. Sure enough they were heading through the NICU doors. They were almost running, and I could see the Nurse Practitioner was carrying him in her arms. They said he had done great through the procedure (respiratory therapy had patted his butt the entire time) and it had only taken about 15 minutes. It was not until they transported him that he became angry again. When I got into the room I could see his limp body hanging in her arms. Then they realized his scalp IV was bleeding. It was all over his head and down his face into his ear. He had sweat it out. They didn’t need the IV any more, thank God it had lasted for when they did, but all his drips were running through it. It was then a rush to hang all new fluids and run them through the new PICC line. Thankfully multiple nurses helped out and it got taken care of rather quickly. They had let me hold him as soon as they got back in the room, and he was asleep instantly. I was so grateful just to have him back in my arms. I held him for a few hours and seemed to be recovering nicely. They had to turn his oxygen up to 70% but his saturations were gradually getting higher and higher in his acceptable range. I was finally able to lay him in the bed and go have lunch at 4pm. I also had the privilege of trying to explain this to Jonny as he is back home in Upland, never an easy thing to do.
When I came back to the room I spent some time tidying up since it looked like a bomb had gone off. It was quite comical how much of a mess we had made. Then around five Beckett woke up with a little cry and then calmed right down. He looked so much better and spent over an hour laying in bed, playing with his toys and sucking on his pointer finger, which is his new favorite thing to do. After almost an hour and a half he just closed his eyes and gently fell asleep. I have not seen him do that in over a week. Then again this evening he woke up pretty content and played while we did his care and gave him a bath. Then I rocked him to sleep. When I put him back in bed to leave, he woke up but was perfectly happy just playing with his hands. It was like a completely different baby from 10 hours earlier. I could not have been more grateful. As I was leaving she had also worked him down to 60% on his oxygen. So he was making progress. Today was definitely draining, but the evening was almost back to normal Beckett behavior that we haven’t seen for quite some time. It was such an encouragement after how much he struggled this morning. I cannot believe how brave he is, nor how he continues to have such strong will to live. Don’t get me wrong, I am extremely grateful that he is a little fighter; I am simply amazed at his strength. I pray he continues to have it in spades.
Jonny and I read the devotional from Jesus Calling every morning, and today’s was all about trust and not giving into fear. It could not have been more fitting, and as I waited for Beckett to get out of the procedure I kept reading it over and over. This day went exactly as God had planned, and he will bring even more good out of it. He continues to be in control, and to show his sovereignty over our journey. To His name be all glory and honor and praise!
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
Continuing to pray that Beckett has fewer and fewer “bad” days. Beckett is so blessed to have parents like you and Jonny. When we are weak God is strong. Continue to stand firm in you faith. Our God is great.