Mommy Confessional: Liam was Re-Admitted to Valley Childrens

As some of you might now, Liam has been tachypneac and throwing up since monday morning. His pediatrician ordered an xray. That xray showed the lungs clear. Liam spent all week cranky, sleeping very little, and increasingly not holding down his feeds. Thursday morning he was still tachypneac and wasn't holding his feeds down 9 out of 10 times. I contacted his pediatrician who contacted UCSF CDH team. UCSF said that maybe he caught a virus and that was that. Friday Liam had appointments with the palmonologist as well as genetics. He was still tachypneac. I explained what had been going on and the polmanologist sent him for an xray and decided to give him a breathing treatment. Xray showed his lungs to be clear. They gave him a breathing treatment but his respitory only barely went down. Not enough for them to be really happy. He was sating at 98%, which was 1% down from monday. We went to genetics for where the informed us they wanted to run an entire genetics panel on him. They wanted to see if he has anymore genetic defects besides CDH and Biotinadase deficiency. They said that even though they dont have alot of info on CDH they do know enough to know that it can occur when they have other genetic anamolies or defects. They are very curios as to size, and my height as well, especially after seeing than our almost 4 year old is the size of a 5 year old. They said that the genects panel would also check his kidneys since not only does Liam has a skin tag on his ear (indicates renal failure), but theres a family history. Meanwhile through all this Liam isn't holding down ANY of his feed. If we put 6 mls into him, 6 mls would come out. After genetics we had to return yet again to pulmonology so that they could take a look at his sats and respitory rate again. His respitory rate was back up and he was sating at 94/95% then would drop to 89% and back up to 95% max. They decided it was enough to admit him. They said we could take him home if we wanted to but theyd feel more comfortable admitting him for abservation and test. The also said they knew we would be back within a day or two because he isn't holding down any formula. Around 3:30-4pm we were Finnaly in our room...I should say Liam and I were finnaly in Liam's room. With it being RSV season, anyone under 12 doesn't get to pass through the double doors into paitent areas. If any of you had to admit a child you know how long it takes to get them settled into their room and have all the ends tied up before you can take a few minutes to breathe. I didn't get done until around 6pm. During that time Justinwas entertaining Lanie. They started in the play yard where she decided to go down the slide face first while daddy happened to be turned away and ended up going face first into the ground. She ended up with an immediate bruise on her chin and biting through her lip causing them to bleed. I was completly torn. I needed to be with Liam answering all the questions and telling them his routine and waiting on the hospitalist to come see him and make a game plan. Next thing I know I get a phone call from Justin asking what my view is of the background. I tell him what I see, the helicopter hanger, the laundry pick-up, the RMDH. He said cool then we hung up when the nurse and PCT came in. They took vitals, asked more questions and told me it shouldnt be much longer and leave. Im sitting there in the chair next to Liam's crib talking to him when I look up and see Justin and Lanie at the window. Lanie was smiling and waving. We got to talk through the window and she got to see her brother and wave at him. The she said "Open the window mommy let me in". I really wanted too. I would have if I could have. I hate being torn between my kids. Finnaly around 6p Liam was all set up and being taken care of and I was able to slip off to go home and pack and return. The nurses kept telling me they had it under control and would call me if they had anymore questions. I left after letting them know I would be back as soon as I could, no matter what time it was. I found Justin and Lanie in the waiting area outside the double doors. Lanie had crawled up on the chair and was half hanging off and completly passed out. I felt so bad for her. Let me give you some advice. When your walking down the hallways or waiting rooms of a hosital and you see a kid (not a baby) asleep on the chairs, don't tell the parents its cute. They're asleep there because hospital policy refuses to let them into their siblings room with BOTH her parents and allow them to take a nap on the pull out beds so therefor there is nothing the parents can do with allow them to sleep where ever they crash until the staff gets down questioning the other parent and releases the parent to take their other child home or to a family members to stay. Just saying. With that being said I do understand policy and know that its there to protect both the patients and visitor and am not arguing with it what-so-ever. We loaded Lanie up in the car and headed to my sister in laws to drop her off. It was extremely hard for me to walk away and leave my son behind. Yet again I was leaving a hospital without him. I should start packing bags everytime we come up here for appointments just in case. After dropping Lanie off we had to grab food that could stay unrefridgerated yet be microwavable (thank God for Campbells chunky soups in the cup), then go pack bags for all 4 of us. On the way back to the hospital I found myself crying. I felt so torn, so useless and broken. Both my children need me and yet again my family is split up. I wished so badly that Liam could just be healthy and that we didn't have to go through all this mess. I wished Lanie didn't have to go through it either. But this is our life right now and I have to accept it. We finnaly returned to the hospital and Liam was sleeping soundly. The had drawn labs while we were out, including a urine analysis having to insert a cathiter to retrieve it. The nurse and PCT said he didn't even fuss, that he acted like it hadn't even happened. It shouldn't suprise me since he's been poked and prodded since birth. Today we talked to the specialist more. She ordered an ECO to check his lungs and heart for pulmonary hypertention. When we had talked I had specifically asked her if it was possible and she said she was thinking that too. Now the ECO has been done but it'll take atleast 24 hours to get the results since its a weekend. We are also waiting for the results of his RSV culture so the staff has to come in gowned, gloved and masked. We are also waiting to speak to a GI since Liam isnt holding down food and had a gtube as well as a fundo. We did clear up that his fundo was done purposly looser so that he could eat via mouth and thats why he is also able to throw up. They just started his normal feeds of soy formula so we are just waiting to see if he is going to tolerate them. They also drew a blood gas this morning. He hasnt had one since our original release date from UCSF. Because its a weekend things will take longer. I was able to get more sleep last night than I have all week. However I am still exhausted and so is Liam. He only taking 5 minute cat naps here and there. If he doesnt see our faces right by him he screams at us until we walk up to the crib. I feel so bad for him. Now Im sitting here listening to the monitors beep non stop because Liam plays games with his cords and likes to make the PCT's and nurses rush in here to pay attention to him :) happy