Izzy's antibiotic was completed Wednesday night, so Dale and I
thought she'd start to feel better by Friday and hopefully, start
to truly eat. By Friday afternoon, she had eaten slightly more, but
her eyes were very sunken in, with dark veiny cicles, and as I laid
her down for her nap, her chest looked sunken in. I immediately
called Dale, then my dad to see if it was time to call the PCP, who
we knew would send us to the ER. Dad suggested I call the GI
because he could possibly get Izzy fluids without going through the
ER. That didn't work on Friday afternoon, so off to the ER we
went.
Of course, this was a Friday afternoon and the ER was jumpin. All of the rooms were full on both the adult and peds side, but Izzy got the prime location being a cardiac kid. Our favorite ER nurse greeted us and was surprised at how good Izzy looked (she hadn't seen us since November), but she could tell Izzy was dehydrated. Unfortunately, the resident in charge of Izzy's care didn't take the dehydration seriously. He wanted me to shove a bottle in her mouth and leave them alone because they were "slammed". While he didn't tell me this, his demeanor gave it away (especially since he didn't ask any real questions after he found out she had ToF) and I overheard him later. Luckily, I know to pretty much ignore cocky residents who never bother to ask important questions because they assume they know it all once they hear one diagnosis. When the attending came over, he asked the appropriate questions, which led to more, and he actually accepted my history list the resident didn't even look at. The attending adjusted several tests ordered by the resident and there we sat.
I came in asking for IV fluids and we didn't get any for almost two hours. They did another chest x-ray to compare to Wednesday, but I never heard the results. They drew blood. It hematized, so they couldn't run the tests to see if Izzy's electrolights were off due to the dehyrdation. They drew more blood. It hematized. Now, in the back of my lay person's head, I'm thinking her blood has clotted twice. She is here for dehydration, perhaps there is a connection. I never got to raise that question though because they sent over an ER tech to release us. We were told to come back if Izzy looked dehydrated again, so I asked the woman, well she still looks dehydrated to me now, what more should I be looking for? Instead of my passing my question on, she told all the docs and nurses that I wanted Izzy kept on the IV longer. I couldn't get anyone's attention since I had to stay at the bed to keep Izzy from hurting herself. (The bed's bars were further apart than the width of two Izzys and she was crawling everywhere.) So, we sat there more, right in the middle of two kids with contagious, serious illnesses who were vomiting continuously, with only curtains as walls.
Then a kid with a peanut allergy came in with breathing trouble and suffering from an allergic reaction. Obviously, a true emergency, so they needed to put her in Izzy's central room. I had no problem with this, but then they decided to place Izzy in the hallway, right by the entrance where all of the kids, their parents, and an entire soccer team passed to go in and out. I lost it. I started to cry and was probably yelling at the nurse. I recall saying "My daughter cannot sit in this hallway, she has DiGeorge's Syndrome, very low T-Cell count. She came here for dehydration and cannot be by sick people. She is much sicker than she looks. They already discharged us and even though she is still dehydrated, I want you to take out the IV because she is not sitting in this hallway so she ends up back here seriously ill." Needless to say, the nurse put Izzy in a curtained room so less people would be by her. If I had wanted questions answered before and couldn't get them answered, all chance was gone after that, especailly since our favorite nurse had gone home for the evening. I was labeled the overly protective mom of the kid who didn't need to be there and was taking up space for kids with real problems.
About 1/2 an hour later, they sent over a second ER tech to discharge us once again. I asked my question about knowing if she is dehydrated since she still looked dehydrated to me, so she read the sheet. No wet diapers for 8 hours (okay, she is on diruectics so no wet diapers for 8 hours, would mean a serious, serious issue), bloody stools, passing out. Our plan is to never let her get that bad because it could cause further cardiac damage. I was concerned that the super thick blood that is clotting immediately could clot in her 3 mm right PA, in her conduit, or in her super small coronary arteries. I don't think any medical professional considered any of that in her discharge. At least I don't think so because the doctor wouldn't talk to me or answer my questions (or else the techs wouldn't tell him I had questions). To get rid of us, the tech said McKenzie didn't look dehydrated to her and since she was happy she must be fine. She refused to believe me when I told her McKenzie has been sick her entire life, she knows no better, and is always happy. I knew I was going to get nowhere and was just exposing Izzy to illnesses that could end her up back in the ER, so we left despite the fact she didn't look much different than when she came in.
We still had to work her very hard this morning to get any liquid down, but the IV must have helped because her eyes do not look as bad today. So, it must have been worth it. Hopefully, it will be enough to get her jump started and eating again on her own. Otherwise, we will see her cardiologist first thing Monday morning and we will go from there.
I wish I didn't have to ask this, but please continue to keep McKenzie in your thoughts. She should be doing great by now, but she is not. Any positive vibes you can send her way would be greatly appreciated.
Melonie
Of course, this was a Friday afternoon and the ER was jumpin. All of the rooms were full on both the adult and peds side, but Izzy got the prime location being a cardiac kid. Our favorite ER nurse greeted us and was surprised at how good Izzy looked (she hadn't seen us since November), but she could tell Izzy was dehydrated. Unfortunately, the resident in charge of Izzy's care didn't take the dehydration seriously. He wanted me to shove a bottle in her mouth and leave them alone because they were "slammed". While he didn't tell me this, his demeanor gave it away (especially since he didn't ask any real questions after he found out she had ToF) and I overheard him later. Luckily, I know to pretty much ignore cocky residents who never bother to ask important questions because they assume they know it all once they hear one diagnosis. When the attending came over, he asked the appropriate questions, which led to more, and he actually accepted my history list the resident didn't even look at. The attending adjusted several tests ordered by the resident and there we sat.
I came in asking for IV fluids and we didn't get any for almost two hours. They did another chest x-ray to compare to Wednesday, but I never heard the results. They drew blood. It hematized, so they couldn't run the tests to see if Izzy's electrolights were off due to the dehyrdation. They drew more blood. It hematized. Now, in the back of my lay person's head, I'm thinking her blood has clotted twice. She is here for dehydration, perhaps there is a connection. I never got to raise that question though because they sent over an ER tech to release us. We were told to come back if Izzy looked dehydrated again, so I asked the woman, well she still looks dehydrated to me now, what more should I be looking for? Instead of my passing my question on, she told all the docs and nurses that I wanted Izzy kept on the IV longer. I couldn't get anyone's attention since I had to stay at the bed to keep Izzy from hurting herself. (The bed's bars were further apart than the width of two Izzys and she was crawling everywhere.) So, we sat there more, right in the middle of two kids with contagious, serious illnesses who were vomiting continuously, with only curtains as walls.
Then a kid with a peanut allergy came in with breathing trouble and suffering from an allergic reaction. Obviously, a true emergency, so they needed to put her in Izzy's central room. I had no problem with this, but then they decided to place Izzy in the hallway, right by the entrance where all of the kids, their parents, and an entire soccer team passed to go in and out. I lost it. I started to cry and was probably yelling at the nurse. I recall saying "My daughter cannot sit in this hallway, she has DiGeorge's Syndrome, very low T-Cell count. She came here for dehydration and cannot be by sick people. She is much sicker than she looks. They already discharged us and even though she is still dehydrated, I want you to take out the IV because she is not sitting in this hallway so she ends up back here seriously ill." Needless to say, the nurse put Izzy in a curtained room so less people would be by her. If I had wanted questions answered before and couldn't get them answered, all chance was gone after that, especailly since our favorite nurse had gone home for the evening. I was labeled the overly protective mom of the kid who didn't need to be there and was taking up space for kids with real problems.
About 1/2 an hour later, they sent over a second ER tech to discharge us once again. I asked my question about knowing if she is dehydrated since she still looked dehydrated to me, so she read the sheet. No wet diapers for 8 hours (okay, she is on diruectics so no wet diapers for 8 hours, would mean a serious, serious issue), bloody stools, passing out. Our plan is to never let her get that bad because it could cause further cardiac damage. I was concerned that the super thick blood that is clotting immediately could clot in her 3 mm right PA, in her conduit, or in her super small coronary arteries. I don't think any medical professional considered any of that in her discharge. At least I don't think so because the doctor wouldn't talk to me or answer my questions (or else the techs wouldn't tell him I had questions). To get rid of us, the tech said McKenzie didn't look dehydrated to her and since she was happy she must be fine. She refused to believe me when I told her McKenzie has been sick her entire life, she knows no better, and is always happy. I knew I was going to get nowhere and was just exposing Izzy to illnesses that could end her up back in the ER, so we left despite the fact she didn't look much different than when she came in.
We still had to work her very hard this morning to get any liquid down, but the IV must have helped because her eyes do not look as bad today. So, it must have been worth it. Hopefully, it will be enough to get her jump started and eating again on her own. Otherwise, we will see her cardiologist first thing Monday morning and we will go from there.
I wish I didn't have to ask this, but please continue to keep McKenzie in your thoughts. She should be doing great by now, but she is not. Any positive vibes you can send her way would be greatly appreciated.
Melonie
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