The rollercoaster that never ends

So, Lennon spend but two hours on the floor before he was transferred back to the PICU. His potassium was way high and they were worried about seizures. So, they watched him and determined they need to work on his electrolytes. On Wednesday night, Lennon took a dive of sorts. He became mentally incoherent and a CT Scan was ordered to make sure there wasn’t any bleeding on his brain due to the added blood thinner. Well, the brain is fine, so the thought was that his CO2 was just out of whack. Lennon quit eating, drinking, everything was no, he didn’t want to walk, he didn’t want to do anything. His mental state did not improve either, thus he has been saying mommy nonstop for 3-4 days now. Yesterday, to help him they though they would take the draining tube out but his oxygen in his blood dropped and so a chest X-RAY was ordered. Fluid on the lungs!!!!!!! So they decision was made not to take out the tube but instead place a new chest draining tube in to help him release the fluids. Within an hour after the procedure he wanted a Popsicle. Well he ate about half of it. Thus given the indication that the fluid made him not hungry, made him nauseous and might be the reason for his mental state. If he does not start eating today they will feed him with a nose tube because he has to have food in order to heal, this is the wonderful thing about protein, though the concept of protein and Lennon still makes me nervous. And yet his ammonia has been in the 50’s-90’s. It is unreal.

My frustration point came yesterday because no one would tell us anything. No one would come talk to us about what the plan is, what is going on with him, why he is acting the way he is and what they are doing to change. The nursing staff has been awesome with the exception of a few here and there, which that happens in any profession. But what frustrates me is that the PICU team and the Transplant team are not always eye-to-eye and often may not agree with what needs to be done. I thought that if Lennon had stayed on the floor, which he truly enjoyed he may have improved on his own. Because there is more freedom to be about and well be somewhat normal. In the PICU you are stuck in bed, except that Lennon does have permission to get up. But one has to keep in mind that he has many hospital visits, both on the floor and the PICU, he kinda knows the routine and I felt like he was depressed because he was again stuck in bed and could not be as mobile as he wanted to be. At the same time, I am ok with him being in the PICU and that it somewhat appears that they are doing everything to get him better. But I also wonder, if they should have done an x-ray before yesterday but his oxygen didn’t give away any reason to. I wonder if there was something more they could have done to catch what is happening now. So ultimately I wish there is more communication with us about what is happening, even if it is just a smidgen of an idea about his mental state or him not eating. I wish that both teams would be more collaborative and come to a mutual agreement. One doctor told me that the transplant team rules Lennon’s care, but they are not the ones constantly with him like the PICU team. Indicating that they PICU team might have some input that should be considered. I don’t mean this to be a negative venting session, but this is my place to vent my frustrations and upkeep of Lennon’s care.

Overall I am pleased with the hospital, and I am pleased with the care he is receiving. Now I just wish that he would get better. This has taken longer than anyone anticipated I think, from the surgeons team to the PICU to us parents.

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7 thoughts on “The rollercoaster that never ends

  1. Petra ~ SO sorry for the rollercoaster. I think you have handled all of this so bravely. Glad to see you being human and expressing your frustrations.I continue to think of you and Lennon and send my best wishes.~ Kim

  2. Unfortunately, it’s not our call when this rollercoaster ends, as with every other aspect of Lennon’s life….Lennon works and heals on Lennon’s time and alot of times he don’t like that either. I guess the stubbornness that we have always known him to have is the best thing he can have right now. Luckily he is just to stubborn to give up and I thank God everyday and everynight for that. Keep the faith, keep the HopeLove ya Short guy

  3. Oh it’s so discouraging to read that your still riding the ups and downs of the rollercoaster when not long ago things were looking good. I can so relate to your feelings of frustration and I’m glad you have vented them … otherwise they just bottle up and cloud your thoughts. We too had the same struggles with PICU we were told that PICU runs the show and the caring team can put their input … which really means they sort of run the show but don’t have to be contacted when a immediate emergency comes up. We often felt left in the dark also and this is a very frustrating and hard feeling to deal with … I so know how you’re feeling and wish you much strength to carry on.We keep thinking of Lennon and what his poor little body is going through. What a comfort to see that his ammonia levels are steadily good and his liver is fuctioning well … now if only all the other things can settle.Keep your chin up you’re doing a good job

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