Let me rewind for you so you understand how we ended up in the ER today....
Monday morning I was blogging and heard Jilli in her bed start to cough. It was that deep yucky cough. I went up there and got her out of bed and got her ready for the day and once she was up she seemed fine. We went to PT and her pulse ox dipped a couple of times but overall it was a normal PT session and she worked hard. After PT we stopped at Target and while we were there Jilli asked if when we got home if she could have her dino mask (neb) and I said yea if she was bringing up that she felt like she needed it that we could do a neb. She was also starting to cough a little bit. We got home and did a neb and then she played the rest of the day and acted fine.
Yesterday morning she woke up and was coughing again and I figured we should just jump on top of it at the start of the day so we did a neb right away. Her pulse ox looked good but her pulse rate shot up to the 160's. I watched it for a little bit and then it came back down to the 120's which I was much happier with. She rested on the couch for a bit but then she went and played. About 4hr later she started coughing more so we did another neb and her heart rate did the same thing but after resting for about a half hour after her neb she started to play. At 6pm she started to cough a bit more so we did another neb and her heart rate went high again and then after a half hour dropped back down and then she went to play. We did facetime with my parents around 7:30 and Jilli was doing puzzles and talking to them. She was being very impulsive from the nebs. Its hard because I know the meds are effecting her but at the same time she was making some poor choices and Lydia also discovered how to disconnect her tube yesterday and so by 6pm I was toast. I had cleaned up tons of spilled milk, had watched a pulse ox and listened to Jillian's lungs all day, cleaned up a poop volcano and helped a 4yr old make better choices. When my dad saw me he told me I looked "great." I was beat. Brent made us dinner and we all hung out. I didn't love how high her heart rate was going but since it would drop back down and the nebs were taking care of the respiratory issues we decided to keep doing what we were doing and hope sleep would help.
At night Jillian is not on oxygen and doesn't sleep with her pulse ox on but since she was having heart rate and breathing issues I figured it was a good night to put the pulse ox on her so it would alert us if there was a problem at night. I decided to let Jilli fall asleep first because I knew if I put it on her while she was still wake that she would just pick at it. Jilli fell asleep around 10pm and then I went to set the pulse ox up but forgetting that the pulse ox plug is three prong and for some reason the two outlets near her bed are two prong (the only two prong outlets in our house) so I searched the house for a way to plug it in and then got it all hooked up. We have a video baby monitor so I hooked that up looking at the pulse ox so I could see the numbers from my bed. Her pulse ox was 96 and her sleeping heart rate was 116. Not the best numbers in the world but not go to the hospital numbers in our world. The pulse ox fell off twice during the night so I was up a few times with that. The one time woke her up too but thankfully it didn't take too long to get her back to sleep.
I got up this morning and started making coffee. We were scheduled to go to MOPs today so I was getting stuff ready. Then the pulse ox started beeping. Her oxygen levels were dipping to 89 and the highest she was getting up to was 94 and she would get to 94 by making this awful wheeze/gasping noise and then a few sec later she would drop right back down. We started waking her up and put her oxygen on her but even on oxygen she only got it up to 97 making that awful noise while laying down (normally her pulse ox only drops with moving... sitting or laying it is at 100). We decided that we were done messing around, she needed to be seen. I put a call into the special needs clinic because they will call ahead to the ER for us to prep them before we show up and I started grabbing everything that we needed to head up and Jilli and I left. Brent stayed home with Lydia because someone needed to be here to get the oxygen.
Special needs called me back on the way up and I gave them the details and they contacted the ER. When we pulled into the ER the lot was full which is never a good sign. We walked in and they were taking care of someone at the counter but a nurse came around from one of the triage areas and took one look at Jilli and pulled us into a triage room. She asked Jillian's name and I told her and Jillian's name was there waiting. We did a quick run of vitals. She said Jillian's left lung sounded crackly. Jillian did not have a fever. While doing vitals Jilli did this cough/sneeze thing and bloody mucus came out (not a lot). They then took us right to a room.
At this point without a neb laying down Jillian's pulse rate was bouncing between 120-140. The PA came in and we decided a chest x-ray first and then we would go from there. Shortly after they brought us to x-ray. Once we came back to the room the Dr came in and said that she was going to consult with Special Needs and Pulmonology to see what they wanted. The chest x-ray ended up coming back clear. Our special needs dr came in and listed to Jilli and we talked. What occurred the past few days for Jilli typically happens in the spring when it gets above freezing, but it has been really nice out here lately so it triggered it early this year. When it is in this in between cold and hot temps she for whatever reason ends up with swelling in her lungs that presents like croup, but no one else around her is sick at that time. No one is positive why it happens and typically during April and May we double her allergy meds to try and help it and last year that worked but we had not done that yet this year. Working with the special needs dr we all decided that what is going on right now is this same typical thing. No one is positive what causes it but we know that to get through it she needs steroids so we started those in the ER. Around noon she started to act a little more like herself and we all agreed that she could go home. Our instructions are that if she crashes again we need to go back.
Since getting home she has alternated between playing iPad, watching TV and doing puzzles. We are just keeping an eye on her and tonight will be the real key.
I was also able to catch up with special needs a little bit about the blood/pee Lydia crazy that has gone on and he helped in that. We see special needs clinic on Monday anyhow for our 2mo follow up so he will be able to listen to Jilli again then.
Tonight I am just worn out! I am wearing Lularoo leggings and a shirt that says "I would rather be watching Gilmore Girls" because at this point in the week comfy is key. When I got home Lydia just wanted to cuddle. She is not use to not having mommy during the day. Jilli didn't pee a lot this morning but made up for it once we got home and she peed all over my lularoo dress I had on (I went for what goes together, makes me look put together so the dr takes me seriously and whats comfy when I was throwing something on to run out the door). Tonight I worn. My heart is heavy. From the weight of Jilli's crash to people I care about having the world heavy on them (from a mom in a special needs group posting their baby close to Lydia's age has left this world, to a close special needs family really worried about some test results that they got back today and my heart is string with worry for one amazing kid, to a another special kid in our life having many insurance struggles that just plain suck) my soul does feel a little crushed by the weight of the world tonight.
Tomorrow will be a new day. Tomorrow will be the fight again (I still have some insurance fighting that needs to happen asap) but for now I am going to cuddle by babies and hope that we all get some sleep tonight.
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| How the night started |
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| when we decided to go to the ER |
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| Jilli in the ER |
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